I recently had some tests done due to starting fertility treatment and found that my TSH level was 4.4 which is within the normal range but too high for IVF. Six weeks later I’ve had two further blood tests with TSH at 19 and now 24.4. What’s worrying me is my TPOAb are over 700. My doctor has said that they don’t know why, they’re surprised by the results and don’t want to start me on Thyroxine (?) until they know what’s going on. I’m so worried that it’s something sinister - what that could be I don’t know because I know very little about thyroids. Ive been TTC for over 7 years and finally though we were almost there with IVF starting next month. However this has now put everything on hold and I feel at breaking point. Any advice on what could be causing my high antibody level would be welcome. Is there anything I can do to help it?
I’m 33, eat well and do HIIT 4-5 times a week. No other health issues other than endometriosis which I’m currently on Zoladex for.
Thank you. I’m just so anxious and want anything to put my mind at rest.
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SunshineSylvan
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My doctor has said that they don’t know why, they’re surprised by the results and don’t want to start me on Thyroxine (?) until they know what’s going on. I’m so worried that it’s something sinister - what that could be I don’t know because I know very little about thyroids.
You're very clearly hypothyroid. There isn't anything mysterious about your condition. And your doctor sounds incompetent not knowing this and sadistic in not starting you on treatment.
In terms of trying to conceive, untreated or under-treated hypothyroidism makes it much more difficult to conceive, and in cases where people do conceive they have a much greater chance of miscarrying.
This sounds like devastating news - but it isn't. If you get your hypothyroidism properly treated you'll have a much greater chance of both getting pregnant and keeping the pregnancy until full term.
Hypothyroidism has various common effects. One of them is that it reduces the production of stomach acid. This then leads to food being poorly digested and to reduced absorption of vitamins and minerals. It is common for hypo sufferers to have low levels of nutrients. Optimising these levels will make you feel better and will increase your chances of conceiving, maintaining a pregnancy, and will improve the health of any offspring you carry. The ones of most interest in someone with thyroid disease are vitamin B12, folate, vitamin D, ferritin, and if possible, iron as well.
Do you have any symptoms of hypothyroidism? You can find a list of the most common symptoms here :
By the way, having a level of 700 for a TPOAb test is not unusual. Many people have much higher levels - in the thousands.
It's trial and error, but some people manage to reduce their antibody levels substantially by eating a gluten-free diet. It has to be done 100% - people can't be "almost gluten-free". It's all or nothing. Try it for three months. If you get no benefits in either symptoms or in antibody numbers then you can go back to eating gluten again.
Some people also try going lactose-free. (I've never tried lactose-free, and don't intend to.) If you decide to try that then do it after the three month trial of being gluten-free. Don't start doing two such drastic dietary changes at once.
It is difficult to comment on fluctuating TSH levels without thyroid hormone results. Have you had FT4 & FT3 tested?
Your thyroid antibodies are massively elevated. TPOAb can cross the placenta and increase the likely hood of thyroid issues in your baby. They can also interfere with your thyroid functions response to hCG (human chorionic gonadotropin) which is your pregnancy hormone closely linked to TSH.
Many members find thyroid antibodies reduce with a gluten or diary free diet. A good read is "Your Healthy Pregnancy With Thyroid Disease" by Dana Trentini and Mary Shomon. Also reading HypothyroidMom's experiences - link below.
Autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies is one of the most common diseases
So your Doctor is extraordinary if he’s unaware
There’s almost 2 million people in U.K. with thyroid disease. About 90% of primary hypothyroidism is autoimmune thyroid disease (Hashimoto’s)
Your results show you are clearly hypothyroid and should be starting on levothyroxine
Endometriosis and Hashimoto’s often go together
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially as you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels NOW
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
If you have high antibodies this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working. Essential to test vitamin D, folate, ferritin and B12
Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
I'm surprised that your doctors say they don't know what's going on... from what you say there's nothing hard to explain... raised TPOab's indicate an increased probability that the patient will at some point go on to become hypothyroid due to autoimmune thyroid disease, and need replacement thyroid hormone therapy (levothyroxine). When the thyroid is attacked by autoimmune thyroid disease, it becomes unable to produce enough T4 /T3 for the body's need , and the pituitary gland noticed this and increases TSH (Thyroid Stimulating Hormone) which is a message to the thyroid to increase production of T4/3.
So this explains why you TSH is going up .
In a person who's thyroid was able to produce more T4/3 , it would do so, and when it had, TSH would fall again..... but in someone who's thyroid has become damaged , it can't produce enough so TSH stay's high and keeps rising, ie still asking for more T4/3.
Eventually TSH becomes over range and fT4 is below range, which is then diagnosed as 'hypothyroidism' and levothyroxine is prescribed to replace the lacking hormone. Usually for life, unless it is a case of 'post partum thyroiditis' which may resolve naturally within a year of so of birth.
If there are raised TPOab then that confirms the cause of the hypothyoidism to be autoimmune in origin.
I can see no reason to be worried about anything sinister causing your rising TSH . (apart from autoimmune hypothyroidism , which is not a nice thing to find you have , but it's definitely not sinister)
What needs to be done by doctors is to check fT4 levels alongside TSH. And probably start treating hypothyroidism with Levo.
The NHS guidelines for thyroid disease diagnosis currently say they should get a repeat TSH/fT4 test done 3 months apart from the first over range TSH to rule out a temporary fluctuation. So they may want to wait a bit to be sure it not going to go back down , but given your pretty high TPOab , and how high TSH is , they may not feel they need to wait so long.
Ask them what they are confused about ...cos honestly, it looks like a pretty simple case of 'autoimmune hypothyroidism' from what you've told us so far.
Thank you everyone for your reply informative responses! I had read about Hashimotos and wondered if that could be the case.
My TS4 is 7.7 which seems in the normal range. I’m being retested on the 12th April for the thyroid things but will ask to be tested on the vitamin front pocket. Interestingly, my blood test 6 weeks ago picked up low iron and I was put onto 4 weeks of Ferrous Fumarate.
I really appreciate all the advice and I will look at my diet and read the links you’ve all so kindly posted. I know it probably seemed a bit pathetic worrying so much but it’s what I do!
I have certainly felt very flat, tired and run down the last 8 weeks which perplexed me as I usually have a lot of energy and feel upbeat. I think from what I read this could be linked to being hypothyroid?
Yes, being hypothyroid will make you feel like that. Nearly all the cells in the body use thyroid hormone , including your brain, so it does tend to affect a random mix of 'anything and everything' from skin to digestive system , to mood , to energy levels and everything in between including fingernails, hair, eyebrows, reflexes. tendons , you name it, its affected by thyroid hormone levels .... which is why so many people have such different symptoms .. there is a lot more to it that just the usually expected weight gain/feeling cold, and lethargy. In fact some people don't gain weight .. i didn't.
Even if fT4 levels are still within range they can still start to treat . An over range TSH with an in range fT4 is classed as 'sub-clinical hypothyroidism' which can, (at GP's discretion) be treated with thyroid hormone if there are symptoms .
I was started on Levo with TSH of 5.7 rising to 6.8 with T4 still within range, because i'd had severe symptoms , and my TPOab's came back in at >3000.
Your TSH is pretty high, often people feel dreadfull even when TSH is still under 10 , but not everyone .. occasionally we see some people can have really high TSH and have it discovered by accident and are not feeling any hypo symptoms.
So there 's no rules for what you should be feeling like, but the most common level for a healthy persons TSH is around 1 or 2, and its uncommon to be over 3 in the healthy so 24 indicates your pituitary is shouting quite loudly for more thyroid hormone, even if T4 of 7.7 is 'in range'
Did you find out the lab range for that fT4 ? ...they vary a lot from lab to lab , so 7.7 could be pretty near the bottom of the range , but you'd need to know the range to be sure.
Many fT4 ranges are around [12-22] . the lowest one i've seen is [7.9-14]
Hopefully you'll get TSH AND fT4 tested again on the 12th and we'll see what's going on.
But you really don't want to be getting pregnant with TSH at that level, (and you body probably knows this, hence it not letting you)
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A TSH of 7.7 is unlikely to be in any normal range in the UK, most are around 0.2-4.2 or very close. My surgery's range is 0.35-5.5 and that is about the highest upper limit I've seen mentioned on here.
Where Primary Hypothyroidism is concerned, in the UK doctors ignore the range and we have to wait until TSH reaches 10 for diagnosis, but if raised antibodies are present then a TSH over the upper limit of the range should give a diagnosis.
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I’m in need of some help/advice please!
