I’m new here but seeking advice. I’ve had classic hypothyroid symptoms for years, hence going to the GP in the first place. I’ve suffered weight gain, tiredness, brittle nails, irregular periods to name a few.
My TSH levels have never been below 3.8 in the last 7 years and have fluctuated between this and much higher levels of 7-8.8. Despite this, I have not been prescribed Levothyroxine. Last year I learned I had Thyroid Perioxidase antibodies present and was referred to an endocrinologist. This didn’t really help as he simply said he wouldn’t treat until my TSH was over 15!
Fast forward to this year and I am having difficultly conceiving. Had bloods done again with the results below:
TSH - 4.77
Free T4 - 15.8
No other thyroid tests were done this time but I was told although my TSH is high, my T4 is normal and so I won’t be treated. I’m just so frustrated of constantly having my TSH fluctuate and continuing to experience symptoms. The GP who sent me for the bloods was sympathetic and said my TSH really needs to be between 0.2-2.5 to conceive as I'm TPO antibody positive. However, as it’s a surgery with lots of doctors I couldn’t get an appointment with her to discuss my high TSH result, so the GP I saw instead this morning thoroughly dismissed it and said my TSH will always fluctuate due to my antibodies but that’s normal.
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DobbySocks
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If you have high thyroid antibodies (autoimmune thyroid disease also called Hashimoto's) and symptoms you should be prescribed Levothyroxine
When trying to conceive TSH should be under 2.5
Low vitamins are EXTREMELY common with Hashimoto's. Obviously good vitamin levels are essential for a baby's neurological development
Low folate and/or low B12 especially
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 if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Ask GP to test vitamins and to do coeliac blood test
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all 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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function 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
Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
Annoyingly, the range for the B12 isn't showing on my printout. GP did show me the range on screen earlier and, although I can't remember what the range is, I know my result was in the middle of it.
Your Endo is wrong in arbitrarily imposing a TSH of >15, there is no basis for that (someone else reported the same, recently, you've probably got the same sadistic Endo).
This is what the NICE guidelines say for subclinical hypothyroidism:
If TSH is greater than 10mU/L and FT4 is within the normal range
Start treatment (even if asymptomatic) with LT4 if aged 70 years or younger — see the section on Prescribing information for further information on initiation and titration of LT4.
If TSH is between 4 and 10 mU/L and FT4 is within the normal range
In people aged less than 65 years with symptoms suggestive of hypothyroidism, consider a trial of LT4 and assess response to treatment 3–4 months after TSH stabilises within the reference range — see the section on Prescribing information for further information on initiation and titration of LT4. If there is no improvement in symptoms, stop LT4.
Regarding pregnancy, your TSH needs to be below 2.5 irrespective of autoimmune antibodies, because what is important is optimised thyroid hormone levels. Pregnancy is a net thyroid drain on the mother, so starting with optimal levels is important. However, during the first trimester, and maybe even up to 18 or so weeks, the foetus is wholly dependent on its mother's thyroid hormones, it can't make its own; and yet the hormones are critical for the brain and other development of the baby. Hence why considering postponing pregnancy until levels are optimised, is important.
Getting treatment is a battle I seem to be losing. I’m heading back to see the GP who mentioned my TSH needs to be below 2.5 for conception and healthy pregnancy next week. However she did say that she would only refer to endo and I’m worried I will get the same one with the same arbitrary self imposed values. Is there anything I could show the GP to convince her to begin me on a trial of Levothyroxine whilst waiting for a referral? I’m so fed up of feeling terrible with a high TSH to only be told I’m subclinical without symptoms.
You are perfectly free to chose where you are referred to for secondary care, so long as they have the relevant clinic of course, and you can name the specialist's team, although you can't insist on seeing the particular specialist - you might see them, but may be seen by someone else in that team. So there's no obligation on you to go where you're GP wants to send you.
Here is the relevant NICE guidelines that I referred to above:
Plus, if you scroll down to "Supporting Evidence" you will find the relevent source material that guided the creation of those guidelines, which you should find useful for making your case.
Thank you, these links are really useful and might be worth me printing out and discussing at my next GP appointment. That is, if they don't eye roll at me arriving clutching print outs and think I'm unstable...
SlowDragon & Maisiegray have given you some very good advice.
However, just read your post and thought I would reply as the neck stiffness was a killer for me, as well as feeling the cold, depressed, weight unstable, no energy and just had no zest for life at all.
From my understanding and this happened to me despite seeing an endo, until your TSH reaches 10 or above the NHS will not step in. I was diagnosed as having Hashimoto's by the endo, and despite getting vitamin levels up, I didn't feel better. My TSH was 6 something and I felt awful. I parted ways with the endo as I started researching and came across this thyroid forum and it was clear my thyroid was struggling.
I was left to get worse and I went to my GP, I was told it was all in my head and how could they help if the endo said that I didn't need thyroid medication (he told me it would make me feel worse, and fobbed me off with anti depressants, which I refused to take, plus told me to go on holiday).
After that conversation I thought what an uneducated idoit. Anyway, when the GP refused to help, my hubby and I walked out. To add insult to injury she told me I had been misinformed about Hashimotos too.
I did get worse and thinking there was no hope, I decided to see another GP.
He saw me and gave me thyroid blood testing, by this time I know what I needed to say and do (blood test as early in the morning as possible) My TSH was 12.2, bingo, he started me on levo. However, I never got on with it and I stopped it, I now self medicate on NDT. Did you have your thyroid bloods taken before 9am in the morning, and didn't eat or drink except for water?
I think what you need to do as others have said is try a gluten free diet, that should help get your antibody results down, and maybe help with your neck stiffness.
If you are still not getting better and the endo doesn't help you, or your GP, the only thing is wait until your TSH reaches 10 or above (in the meantime you will feel like a zombie and don't know how long it will take) or, self medicate.
This will mean your on your own, this is not a bad thing as I am in control of my own health, without having to fight for an increase in thyroid medication, or going by the flaming blood results that the GP's are obsessed about, I go by how I am feeling.
Many people on here keep it quiet about self medicating, as some GP's immediately blame any problems on your self medicating, and, put the fear of god into you, about you could die, blah blah blah.
I'm not going to let a GP who I see for 10 minutes try and tell me what I should and shouldn't do, as I know I have the information I need on here to help me get better. Furthermore, it's all outdated information that the NHS has on thyroid anyway, and often they don't test T3 which is VERY important.
I'm prepared to take the risk of self medicating (no risk) by living happy life and not living like a zombie, with no life by the NHS route, and keeping my GP happy.
Last year I learned I had Thyroid Perioxidase antibodies present and was referred to an endocrinologist. This didn’t really help as he simply said he wouldn’t treat until my TSH was over 15!
diogenes Do you have any comment on this insanity? The person who wrote this post wants to conceive.
On what grounds was this arbitrary number of 15 for TSH plucked out of the air? That doesn't even match the 10 that the dogma pronounces as the start point for treatment. In any case TSH has no direct influence on getting pregnant - high values prevent pregnancy likelihood for indirect reasons. Simply, leave this inadequate doctor and find another with a bigger smattering of knowledge and perhaps a more grownup attitude. TSH values may indeed fluctuate, but the average effect is elevated, which is the reason for treatment. Also the system is steadily deteriorating. Merely saying that for a week or so the TSH may temporarily drop into the "normal" range before rising again and denying treatment therefore is ignorant. What FT4 and FT3 are doing is necessary to know.
The endocrinologist was frantically trying to make a point of how my levels were just fine compared to a lot of people. Then continued to say even when patients arrive to him with a TSH of 15 he does nothing and then also said my TPO antibodies were low compared to others (they were in the 200s at the time).
I think the fact that you're trying to conceive and have irregular periods is a good argument to convince doctors to start doing something to help you. I don’t mean to be sexist, but I found female doctors to be more compassionate. When you see your doctor next time, make sure you stress how much you are concerned about your health as a woman.
Unfortunately, I see male doctors 9 times out of 10 because appointments with female doctors are never available in my surgery. The only more or less successful appointment I had was with a female doctor. I was feeling that bad and frustrated that I nearly burst into tears (unintentionally!). Seeing that she booked more blood tests for me including female hormones and vitamins as well as increased my levo dose.
I understand what you mean. The GP I saw this morning did decide it would be a good idea to have my progesterone levels measured via a blood test at day 21. When I mentioned that I have irregular cycle, hardly ever 28 days, and sometimes have not even ovulated at day 21 he simply said to me "well that won't really matter, just do the test at day 21 of your cycle." The sheer frustration!
There's a strong family history of rheumatoid arthritis. Aside from this, there are no other cases of known autoimmune disorders. However, my dad's parents lived abroad in a very remote area where healthcare wasn't available so that's not to say that they didn't suffer from any, just that we don't know. Also, I do have a cousin that suffers with hypothyroidism too.
The risks are my concern also, as people have said above, the fact that in the first trimester your unborn child is dependent on your own thyroid function could lead to some very serious complications. I've asked two GPs if I should halt TTC whilst my TSH is still erratic and both have said no and that it would pose no risk to myself or an unborn child but what I've read online certainly says otherwise.
Yes, I'm tall and on the more slender side. For me, I know I've put on weight, especially around my highest TSH spikes over the last few years. However, to look at I'm definitely not classically hypothyroid as I still fit in a size 10. Although my permanent state of coldness brittle, splitting nails and fatigue would definitely disagree with not being 'classically hypothyroid;!
Does anyone know if fertility specialists are able to intervene in regards to your thyroid or if it will solely be an endocrinologist's job? Same GP who refused to believe there was anything wrong with my thyroid despite high TSH and antibodies has referred me to a fertility specialist. So at least something is occurring, I just don't know if they'll be best place to get to the root of what.
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