My hypo story:
Diagnosed with Hypothyroid w hashimotos (meaning thyroid antiobodies that destroy thryroid tissue and more likely to be permanent if have hashis) when DD was about 1. Had no energy and could not think clearly.
Took Thyroid extract for a while, felt so much better. But actually feel back to myself now am on Thyroxine and I didn't think it would make any diff but it did.
Changed to new endo, v serios but v good, and started taking Thyroxine as was easier as better know with TTC. Started on 100micrograms at night in Nov. TSH = 2, endo said he wanted it around 1, so increase to 150mcg in Dec. Took that in morning w breakfast as hated taking it at night!
TSH now = .88 (perfect) Free T4 =16 in high part of range (good), Free T3 = 4 (lower part of range but OK).
I have been worried about my antibody levels as I have had 5 biochemical pregnacies last year and thought that might be the problem. My levels were in high 3-400s untreated,and 40 and 130 before Thyroxine and now 18 and 43. Endo is not worried about these levels.
He says that you would expect to have an elevated level of ATAs (antithyroid antibodies), as I have had the disease. Similar to if you had measles, then you will always have measles antibodies.
Still my body, so I am still taking a herbal prep from np to try to decrease the antibodies.
If anyone has seen a reproductive endo, would be very interested in what they say.
over and out!
Last edited by Samandpoppy; January 30th, 2009 at 07:28 AM.
: clarity
From research I have done on the internet (which is not as good as a good endo) and from a paper the FS gave me, the ATA's cause a problem where the Thyroid issue was not treated, but they didn't make any difference to fertility where the thyroid problem was treated.
Not sure if it is the ATAs (I suspect probably not now) or just being over 40 that is my problem. Could be something else, eg NK cells. Easier to focus on the ATAs, as I can't do anything about being over 40 except lie about my age!!!
I was dx after DD was born, and am currently on 50mcgm/day of thyroxine. I just had my bloods done again and get my results Monday. I have felt for a long time that i'd benefit from an increase but my last GP insisted i was ok because my bloods were "normal". My TSH, last time it was measured, was 4.7. 0.5-5 is normal in the UK.
I'm going to call for my results on Monday and if my TSH is above 2.5 i'm going to ask to have my doseage increased but i'm nervous because i just don't know what the GP will say about it all.
We're hoping to ttc in the summer and from what i've read it'd be wise to get my TSH to about 1 before ttc. I haven't had my antibodies checked since i was first dx and in some ways i don't think i want to. Maybe if ttc proves to be a problem then i will have them re-done...
Hi hoobley,
Hey so cool to get a reply! The guidelines vary and have been revised down to 0.3 - 3.5 here.
Doesn't take long to change blood levels, about 4-6 weeks.
Yes I have read and my Endo Dr H recommended TSH = 1 as ideal. I know GPs do Thyroxine in UK, but maybe worth seeing an endocrinologist? Much more specialised, but probably expensive. Only cost me $188 here which was great. Yes you can live with a TSH of 4.7 but its no good forTTC (in my humble opinion).
I feel better, stronger, more robust emotionally going from 2 to .88, (100 to 150).
We can only get thyroxine in 50,100, and 200 pills here, so I have to take a 100 and a 50 each day.
let me know what your test is...
Don't worry aboutthe antibodies, just get the the TSH right (just ask me I'll tell you what to do!!!)
Also what is to stop you from taking 2 x 50s if that's what you want to do, then get tested by different GP!! I know I'll stop at nothing.
I dont know how to paste journals, but there are a few threads with various thyroid conditions .. go to the main page, and scroll all the way down to health etc, you will find them in there, I have Graves, and I found a thread in that section ,.. I think... Just thought I would let you know as there is heaps of info for you
My last GP was ok with adjusting me up to a point, but once my TSH got down to the 3's (3.7 was my lowest every reading so far) he stopped upping my dose, even when it crept back up into the 4's. I would have to self-refer to an endocrinologist, which would be free but could take anything up to a year to get an appointment. My sister has Hashi's, PCOS, Endometriosis, is morbidly obese (BMI is about 46 i think), type 2 diabetes and hypertension and even she is still waiting on her endo appointment to come through. My BMI at the nurses office was 25.5, but i think that's mainly because my posture and the fact that i'd just been on a longish run meant i was measured 3cm shorter than i actually am, and even with that very modestly high BMI the nurse basically dismissed me. What concerns me is that for a year i maintained my weight and then in the last year 6kg has crept on without me changing anything by way of diet or exercise. My last GP also dismissed my weight as a concern. They don't seem to get it - yes, ok, i maintain a healthy weight, but i am exercising 6x a week here guys! I bust my gut to stay this way and my weight is STILL creeping up! I feel like banging my head on the desk and asking if i have to be obese before they will consider treating me!
I'm hopeful for my new GP, i have reems of studies and articles to take and wave at them if they aren't willing to listen. Unfortunately the "normal" TSH range in the UK has apparently just been changed to 0.5-10! So goodness knows what will happen. As such i'd just like to get my TSH under 2.5.
I have considered adjusting my medication myself, but my family history is crazy with a lot of heart and circulatory problems there, and i'm at higher risk of fibrilations and strokes because of that, so i don't want to risk going hyper without proper supervision. As such i feel ok, a little heavy in my limbs, a little tired, a little puffy round my eyes, but not too bad. When i'm really hypo i get arthritic-type pains in my knuckles when i wake in the mornings and i don't have that at the moment.
I am thinking i need to get even stricter with my food because clearly even the hypothyroid cannot magic fat out of thin air!
Gosh hoobley,
What a mine field. your poor sister, no doubt the hypothyroid is not helping her weight at all, and then the weight contributes to all those other problems. She's probably pretty depressed about it all too. Another auto immune condition.
Good on you for keeping yourself in good shape, wow that is such a committment. its much harder for us to get it off. I can do it if I try really hard, but it is not much fun. Mary Shomon's diet book is quite good, I assume you've seem her website. I found her books more helpful to be honest. Same kind of diet for PCOS as far as I can tell.
I think it would take a lot to get you into hyper, but yes the scary side is scary. You probably know more about it than me or than the GP at this point! I hope the new GP works out.
I would self medicate to get weight off, and to give myself best chance of another baby, to get to TSH between 1 and 2, but then I'm pretty bolshy now! I have started to go to different docs to try to get a few that will do it my way. I try very hard to listen to them and not tell them what to do, but as you can probably tell that is quite difficult for me!!!
I think I'm about 28-29BMI, I am hoping that my new tsh levels will help with this over the next few years. IVF is no time to diet, I eat pretty healthy, but bit too much sugar and choc and need to get back to exercise.
Most GP's don't get it, they have hardly any training in endocrinology, and really don't understand putting on weight for no reason, or the devastation of miscarriage, unless it has happened to them, and the range recomendations certainly aren't helping. Might as well go on the list to see an endo, or even ring a few and get on a few waiting lists now, you might get a sympathetic secretary/nurse who can put you up the list, plenty of them have problems too!! Anyway at least if you are on a list it will come around eventually, you can then decide whether to go or not. Are there any private endos that you can pay to see? Anyway, I feel very lucky to have found a good endo through one of girls at mother group, she had a terrible one first. Perhaps you should fly to Aus for a holiday and come and see mine!!! He even gives us a few blood test srcipts and says just ring him when do it so he can ring back to advise medication change. how good is that!
I do get arthritic sort of pains in my feet and a little twinge elbows and knees, but not hypo at the moment, might be just cause I've been wearing thongs (flip flops) for last 2 months! I also had plantar fasciitis (sp?) in my feet before Dx.
Gosh I'm so bossy!!! Just ask me, I'll tell you what to do!
SamandPoppy, Hoobley and to all the lurkers (i hope theres some!):
This is my stupid lil thyroid's history since March 08 (when it was discovered i have hypo)
TSH was 6.9 (totally untreated - found via blood tests after 12mths TTC)
Started on 50pg of Oxoxine :TSH 3.6 ; 2.7 ; 4.9 ; 4.4 (monthly readings)
Started on 100pg as i went to my GP unhappy with levels - she called an endo who was friends of hers over the phone at consult and endo advised aim for between 1-2 and i might need to get up to 100 or 150pg to meet this.
On 100pg : 0.5 (fell pregnant) ; 0.3
When miscarried gyno/obs advised TSH too low and lowered dosage to 75pg. (However from the reasearch ive down in the first Trimester the TSH can be as low as 0.3 to be meeting bubs needs)
75pg: TSH 0.8 ; 3.4 (At this level i had consult with gyno/obs who disregarded my concerns about it being too high - he thinks it only needs to be below 4) ; next month 5.0!!!!
I thought if i ever got a reading that bad i would break down and cry - but i was taken over by fury about how badly my thryoid is behaving and being treated.
I asked receptionist at QFG to actually put reading in front of gyno/obs and make him take a look. He called and advised to increase dosage back to 100pg - which is what we tried months ago but only for 2 months as he then thought it was getting too low.
What i have found is when i start on a dosage it does go down but then comes partway back up and stabalises and that if i give 100pg a good go for at least a couple of months that yeah it may go a lil on the hyper side but then come back up to hopefully between 1-2!!!!
I have an endo appointment in Brisvegas late FEB and yes SamandPoppy i have compiled 3 pages of questions already along with all my research from American Journals of Endo and various other worldwide journals and case studies i want to be so informed so i can ask quality questions - may nothing stand in the way of me falling pregnant and maintaining the pregnancy!!!!
I'm sure we have all had enough of this TTC crap and would be just plain naive to go with one person's opinion on how i should be treated - no matter what that persons quals are from before i was even born!!!
I see how busy my gyno/obs is and how we are squeezed in for an appointment and then squeezed out and called away to deliver a bub, and how the quals on his wall are from before i was born and wonder just how much time he has to spend towards reading journals and case studies from the last few years and keeping up to date with a disease that is somewhat related to his speciality.......
Well thats my whinge - promise il make my next post more upbeat!
Firstly SamandPoppy - you clever girl...you did the thread..well done..!!
I have Hashimoto's and PCOS. Have had it for years. Took a while to get the Thyroxine right and am on 150mc - that was after being on 100 for a few years..then i started questioning my levels.
Am actually seeing the Endo in about 2wks and am having a BT .. so will be checking the levels again thoroughly.
SamandPoppy - may I ask if you have had the test for NK cells yet??
Hi Girls , so exciting to get a few posts in here this being my first and all!!
Wouldloveabub - thanks for that will have a look!
MummaW - you go girl, get that treatment you deserve - good i mean!! I was Naiive for a year with one mode of treatment and now have changed am feeling much better for it, so happens to best of us IYKWIM. Interesting about dose going down a bit then up, will have to keep an eye on that.
MsPink -Thanks!! re NK cells, and have been thinking about it. am in TWW for last FET right now, but maybe will go to Sydney for the day for the test. My FS knows Dr S, so will be further questions about it when I see him next wed.
HI SamandPoppy and the other ladies on here with similar thyroid problems, my story is fairly similar however I only found in December that I have hashimotos hypothyroid condition when after 3 recurrent m/cs I decided to get a whole heap of blood tests done, all of them came back normal except for my thyroid (mind you I did have the thyroid tested a few times with normal results) anyway my levels came at 11mul and they should be in the 0.40-4.00 range according to the docs here. So in the meantime I had already made an appoitment to see Dr Gavin Sacks (endocrinologist who specialises in recurrent miscarriages and HOBBLY HE DOES DO INTERNATIONAL PHONE CONSULTS, CHECK OUT HIS WEBSITE...JUST GOOGLE HIS NAME) so he too along with my gp told me to start taking Oraxcin 50mg though he thinks because of my size that I'll probably need to up the dose , which I have done of my own accord am now on 100mg. I always wondered why I could never lose a lot of weight and why it always krept back up, I also have a gastric band which never really helped and IM still 108Kgs, my BMI is around 37 which is high and I need to get it down, so hubby and I are on a diet together he's doing it to support me god luv him!
Anyway thats my story, Dr G said that I should ttc til my levels were down in that range and taking all into consideration my weight and my age I should have a 70% chance of a successful pregnancy, and if I miscarry again he wants to see us both for more blood tests one of which was the NK cells test.
Ok well will keep you informed of how things progress, Im hoping to have my first blood test again after I get back from Brissy in a couple of weeks!
Samandpoppy--See, I told you I wouldn't forget to post in this thread! Thanks so much for creating this thread!
A big to hoobley, wouldloveabubba, mummawannabe, MsPink, and Mannie (a familiar face!). Thanks for sharing your stories!
My story began back in '91/'92. I never even realized that I had a problem... a girl I sat next to in class rudely said to me one day, "WTF is wrong with your neck, do you have a thyroid problem, or something?" She told me that I had a big lump on my neck, which I did, but had never noticed before. I was only a kid in high school at the time, so my mom took me to the dr. and they ran tests, and sure enough, was dx with hyperthyroidism/Grave's Disease. After learning that, things started falling into place.... the tremors I'd been having, increased appetite (my mom told the dr. that she practically had to nail the food down because I would be hungry all the time), sweating even if I was cold, feeling hot all the time, migraines that would make me vomit, my eyes were slightly starting to get puffy--I wouldn't say bulging, but had it not been treated, they would've ended up that way. It was all related to my thyroid... and I had never even heard of a thyroid! So I ended up having radiation... I had to drink iodine... it was weird, especially since I was only 17 at the time! I think that's why I still know so little about it all.... it was all a foreign language when the dr's would talk to me about it! So afterwards they put me on Synthroid, not sure what the beginning dose was, but eventually it ended up being 100mcg, which is still what I take now.
When I was pg with my DS1, my body somehow started producing the thyroid hormone again--which my dr. thought very strange, because the iodine completely killed my thyroid... I should only get the hormone via my pills. Anyhow, had to be completely taken off my meds during my pg'cy with him. Afterwards, back on meds. With DS2, almost 8 years later, I had no change whatsoever in my thyroid levels, I stayed on the 100mcg the whole pg'cy.
So then fast forward to Nov. 2008... moved all our meds from the kitchen cabinet to the bedroom... big mistake because I'm one of those "out of sight, out of mind" people, so I completely blew it! In 6 weeks, I probably took maybe 6 pills--I know, I know, no need to lecture--it was really stupid of me!!! Anyhow, when reading thru the posts in the TTCML thread, Mannie ( ) mentions her findings on her thyroid, which prompted me to do a little research. While reading thru the symptoms of hyperthyroid, I realize that I had been experiencing every one of them daily! Tremors, weight loss--I've lost about 12 lbs. since Nov, sweats, etc. While reading, I also learned that endo's are trying to change what is considered a normal level... did that make sense? I think my normal levels are somewhere around .4, but I'm reading that in order to sustain a pg'cy, it should now be down to at least a .2!! (or something like that... I may have a decimal off, or a missing 0 somewhere! )
So I went to my dr. and he gave me a lab slip to check my thyroid levels. He told me to wait 2 weeks since I hadn't been back on my meds for long, so it would make the test inaccurate. So that means I go in this Thursday (which is Fri. for you Aussie girls) for my BT's, and I guess we'll wait and see what happens. Not sure my dr. is willing to lower my dose in an attempt to help TTC, tho, so not sure what's going to happen either way. If there's no change in my dosage, I may have to only take 1/2 my pill in an attempt to lower it on my own. Will keep you posted on how things go.
So there's my story.... thanks again for starting this thread! Looking forward to getting to know you and sharing our continuing stories!
Well it's Monday but i just called my doc to be told that the labs won't be back before 1pm...
I am wondering, can anyone give me links or email me studies or articles justifying keeping TSH low in women ttc? I only have the Endocrine society guidelines and one study, and more would be useful. Either the benefits of supressing TSH to low-normal in general or having TSH low for TTC would be amazing. If anyone needs my email addy just PM and i'll give you it.
Hoobley--I found this for you, and the link is below--hope it helps!
"The normal TSH level for the control group of pregnant woman without autoimmune thyroid disease? 0.9. A TSH of .9 is a far cry from the so-called "normal" TSH levels of 3 or 4 or 5 that some doctors feel are no impediment whatsoever to getting -- or staying -- pregnant.
My endocrinologist at the time I was trying to get pregnant believed very firmly that most women with a thyroid problem should be maintained at a TSH level of between 1 and 2 in order to help them get pregnant -- and maintain the pregnancy."
I notice in the first link you give me the author refers to a 1994 study, does anyone have links to that actual study? I am very wary of presenting Mary Shomon's work to a GP because she is generally recognised as a bit of a crackpot in medical circles. I did hear one endo say to another once (not my endo, when i worked in a hospital) "Well, she's got Shomon's book so now she thinks her twisted ankle is down to her thyroid!" She's not well-regarded by many and though i don't discount her, i don't want to alienate my doctor from the word go, iykwim.
Also i see you have the link to the AACE guidelines. I'm going to bring those up, but TBH i'm not too hopeful on potential impact of that one, since the UK's new clinical guidelines state that the TSH "normal" range is 0.5-10, yes TEN!
Anyway, i got my results over the phone:
TSH: 2.76
fT4: 17.5
I didn't ask for my fT3 because the person telling me the results didn't know what the numbers meant and so i instead arranged to talk to a GP tomorrow.
I'm kind of up in the air about it now because i had kind of decided to go with the conservative TES clinical guideline which states that for pre-diagnosed hypothyroid women who plan to ttc the TSH should be kept at <2.5.
My main issues now are that a) i went for a long run and my legs (finally) didn't feel dead (which for me is a sure sign of being hypo, when my body isn't responding to training) and in fact i finished my run feeling sprightly even, and b) with levels so close to 2.5 i'm not sure i would want to mess with them and risk getting hyper (my TSH level was 16 on nothing, 4.7 on 25mcgm/day and has been 3.8, 2.95 and 2.76 on 50mcgm/day) and having to sort that out again before ttc...
I have a Mirena coil fitted and am pretty sure i'm still O'ing, though that's based on EWCM, not temping or anything. Should i temp/OPK to see if i'm Oing? Lots of people get no AF when they use Mirena but i still do. But then i got AF when hypothyroid, with a big goiter, fully BFing DD 6 weeks after she was born...
Hey Hoobley!
I have heaps of links saved to my fav's - i have printed all of the offical ones to take to my endo later this month, incase he tries to disregard my concerns.
I am certain my TSH should be between 1-2 , however im not exactly sure as to why....
Is it that it should be in that range so that when you fall pregnant you have your thryoid level where it should be so the baby is getting all of its needs? As i know in pregnancy the highest your TSH should be is 2.99........so having it consistantly between 1-2 before conception would indicate the thryoid is somewhat under control and will be easy to maintain during pregnancy........although i know most ppl have to increase there oroxine during pregnancy to maintain this level.
OR
does having your TSH between 1-2 actually make you more fertile and increase your chances of pregnancy cos this is where a normal person's TSH would be?
TTC with Thyroid Issues
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Samandpoppy--See, I told you I wouldn't forget to post in this thread! 
Thanks so much for creating this thread!
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