Complex history.. Auto immune with Sjorgens, possible slow progression lupus, Hashimotos, retinal vasculitis, RO positive, endometriosis, Adenomyosis, and Fibro myalgia although I believe the pains are to do with auto immune... 7 early miscarriages and chemical pregnancies last 2years...but it seems due to my other conditions I was not tested for thyroid issues til this spring and tsh was 13.9...hoping this caused the losses.. Started 50mcg of levothyroxine, then 100...tsh is now 2.7 so we started trying again fir last time... Giving 6months then I go back on immune suppressants.. But almost 100% sure we just had another chemical/loss.. Dr would not increase levo now tsh is 2.7, despite under 2.5 being recommended for successful pregnancy... I have written asking to go up 12.5mcg and sent copies of guidelines from various sites regarding tsh level and conception and pregnancy...also noted I am still having to sleep over 10hours to be able to function, am still not loosing any weight, despite a very healthy and calorie controlled diet etc.. . But not heard back yet.... Not sure what to do... Desperate for our own child, despite the risks involved but am getting to the stage where I need to start immuno suppression therapy again and as I am now 40 my risk of pre eclampsia is getting even more severe....
Tsh down to 2.7 but still had chemical pregnanc... - Thyroid UK
The aim. despite what some doctors believe, is not a TSH to get to somewhere in the range but to get it to 1 or lower. Whatever makes patient feel well. Your Free T4 and Free T3 are also important as both have to be in the upper part of the ranges.
I am very sorry about all of your miscarriages - and the disappointment and despair that follows. This is from the following link:
"The results showed, as compared with mothers with a TSH 0.48-2.49 mIU/L, mothers with a TSH level between 2.50 to 4.29 mIU/L prior to pregnancy were more likely to have a miscarriage, premature delivery, vaginal delivery assisted with forceps and vacuum while mothers with TSH level between 4.3 to 10 mIU/L had higher rate of miscarriage, loss of pregnancy in second half of pregnancy, premature delivery, cesarean section and large infants.
WHAT ARE THE IMPLICATIONS OF THIS STUDY?
This study shows that higher TSH levels before pregnancy, even when they are borderline high, may be associated with a higher rate of miscarriage, pregnancy loss, cesarean section and large infants. The connection between a TSH level before pregnancy and complications of pregnancy has not been studies in such a large scale before. What is not clear is whether treating mothers with higher TSH levels would have any effect on these results, so more studies should be done to evaluate this possibility. However, this study suggests that women with borderline high TSH level should have subsequent TSH testing in the beginning of pregnancy and be referred for treatment if necessary.
— Shirin Haddady, MD
This may be helpful as the author also had miscarriage
Your Healthy Pregnancy with Thyroid Disease: A Guide to Fertility, Pregnancy, and Postpartum Wellness
Thanks for that... This is one of the links I printed and sent to Dr with letter... I am just concerned that they are going to say no.... Then I don't know where to turn
For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
Have you had vitamin levels tested.
What supplements are you taking?
With Hashimoto's the aim of Levothyroxine is to bring TSH down to around one and FT4 towards top of range and FT3 at least half way in range
As you are already diagnosed as Hashimoto's standard guideline of TSH under 2.5 doesn't really apply. It needs to be lower
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
Are you on strictly gluten free diet?
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Ideally ask GP for coeliac blood test first
I would suggest getting the full thyroid testing that SlowDragon mentions and also getting all the nutrients tested and optimised that you can, irrespective of what else you do and whatever you are hoping to achieve. Experiment with diet changes too. Going through life with insufficient thyroid hormones and low nutrients, and gut pain from intolerances, is something to be avoided if you want to have any quality of life.
I just wanted to point out that if you live in the UK that it is possible to buy thyroid hormones abroad (Levo, T3, and NDT) and import them for your own use. And this is quite legal. You are not (currently) doomed to do exactly what your doctors tell you you must do in thyroid terms.
Thanks... I have looked at diet over the past 6 years and nothing has made any difference even after months.. Had t4 when first found out tsh was high but not since and from my records I can't see t3 has been done at all.. But GPS don't really seem to know what levels thing should be.. If the NHS blood test report says normal or within normal limits or no further action required then they won't do anything more... Conditions are all so bad now I am barely working and have been awarded Pip so I am going to look at private blood tests... I can't really afford the full one still but does the finger prick one give accurate enough results?.. Also do you have a link or such for where to get levothyroxine without doctor intervention incase they refuse an increase? Because its all so complicated with the other conditions, I want to be careful about going against GP as I already spend so much time in hospital I would not want to cause more problems for myself but I need to be in charge of my body
So have you been on strictly gluten free diet or dairy free diet?
Lots of people on here use finger-prick blood testing and seem to be quite happy with it.
Note that if you order from Medichecks by the end of September that you can get 20% off the price (if there isn't a discount on the price already - discounts aren't additive). The discount code you need is MED99.
This test is the most informative one to do as a starter :
But there are cheaper tests, and you can get 20% off these until the end of September :
TSH (a pituitary hormone, not a thyroid hormone) is really not terribly helpful, particularly with all the other autoimmune things you have going on. To find out how well your thyroid is functioning you would need Free T3 and Free T4. You really need to get your nutrients optimised too.
Do a web search for the effects of iron deficiency, folate deficiency, vitamin B12 deficiency , and vitamin D deficiency on your own health throughout pregnancy and the health of any embryo/foetus/baby.
Regarding where to buy Levothyroxine, you would need to write a new post and ask for recommendations to be sent to you by private message. We don't discuss sources on the open forum. Also, once you've had a few replies, check with one of the Admins whether the one you've chosen is reliable or not.
All my vit levels are good, not that I have them tested monthly. Previously have been gluten free for almost 9 months and it made absolutely zero effect on any of my conditions... Now I eat normally although I avoid alot of gluten as I carefully control carbs and choose things like boodles instead of pasta etc...
But I will start a new thread re alternative to Dr's for levo... If I get a no from them
Geneticist on nhs is not an option.. And it's a bit late now to be seeing a new consultant considering we have 6 months til we close the door...the sad fact is for all the positive aspects of the NHS, it is also extremely flawed...
Agreed.... What really gets me angry in my situation is, I have been let down by NHS throughout my life and caused alot of hardship and heartache through their negligence, such as being told by fertility clinic just before we got married that we would never have our own child as I don't ovulate due to endometriosis - however they neglected to say if it is successfully treated and removed I may start ovulating again so we went 9 years not trying and me on the pill to avoid endo returning... Then the fact I had such a severe hernia following the last major endo removal where surgeon had to remove half my lower abdominal muscle and as a result nicked the sheath and instead of repairing properly then, he slapped a small patch in the outside (not going to hold anything in) and when a few weeks later it herniated and he called me in, he said he was playing golf at the time when he got the call and he said he was surprised it didn't happen sooner!!!! But they left me for near a year before repairing... By which time every movement was agony and I could feel ripping... After the repair surgery I told 5 separate Dr's and nurses I could not wee properly but they ignored and sent me home. A few days later I go to gp in massive pain and in the conversation I state I still can't wee properly. He gave me more oromorph. 3days later we called an ambulance who took me to emergency and gave me intravenous pain relief (ontop of my tramadol, cocodamol and oromorph), I again told the lengthy story of my condition but stated since op I can't wee properly. They gave me some more pills and after a few hours pain subsided a bit so they sent me home. Next day I was rushed in again. This time a student nurse actually listened and put in a catheta which I filled in seconds. I had to go home with a catheta for 3 days which was awful beyond words... It left me with a leaky prolapsed bladder which was strung up a year or so later and hs never been right since. The auto immune diagnosis has been a massive trauma, and I only have a diagnosis now from demanding a new rheumatologist and then demanding she do the auto immune panels again (she said no point as all been inconclusive or negative over the 6 years), - result was now RO positive so we are now waiting for Ana to switch to positive to confirm lupus... But even with this demand of testing she did not bother with the basics (diabetes, thyroid, vits ).... I only have my hashimotos diagnosis because after this I went back to gp and begged for help as I could not cope, otherwise I still would not have had the hypo diagnosed.... But after all this, the thing I am most angry with is after the the 4th loss we went to fertility specialists that are supposed to specialise in recurrent loss, I had hysterescopy, scans and tests.... But no bloody thyroid test, despite thyroid issues being a huge cause of pregnancy loss... I have been repeatedly failed by NHS and it has cost me quality of life, hardship for years, and looks like it has cost me the chance to fulfill mine and my soulmate's dream to have a baby together.
Agreed... But what is the answer? I know nhs is under funded... I know auto immune conditions are a headache to diagnose and some to treat etc but I look at research in the states and it seems they are so far advanced.... I know I could probably get more help going private but when you cannot afford to, then you expect to be able to rely on your Dr's and consultants... Its only recently I have started questioning everything and making more demands... I do have a good GP if I can ever get appointment with her rather than one of the others, and in response to my letter she has put a script out for another 12.5mcg daily of levo and another bt in 4weeks, so maybe that will be enough to get me under 1....
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