I am wondering if anyone has any advise on whether I may have hashimotos or a pituitary problem?
I have recently been diagnosed with Pmdd and have been through years of hell with my mental health during the two weeks before my period, virtually every period since 12 years old, I am now 45.
I read an article about non functioning pituitary adenomas being a possible cause of this, and in the past I have had an ATCH test which came back normal, but my cortisol was borderline low.
My Tsh has always been in range, but my T4 and T3 have been on the lower end of the range.
Recently my T4 dropped out of range and my Dr agreed reluctantly to try me on a small dose of levo, now my T4 is in range and I have been taken off the levo so as not to suppress my TSH.
My levels before levo:
TSH- 1.28 Range (0.27-4.2)
Free T4- 10.8 Range (11.1-22)
After levo:
TSH- 0.76 Range (0.27-4.2)
T4- 12.9 Range (11.1-22)
T3 was not tested. But in the past it has shown as this:
Free T3- 4.5. Range (3.1-6.8)
I also have high TGAB and TPO antibodies, so I would guess it’s hashi’s. Just can’t understand why my T4 got so low and yet my TSH was still well within range. I have read it’s almost unheard of to have both hashi’s and pituitary problems happening at the same time, but I feel a little lost with my results.
My Dr has basically written me off and sent me to the mental health team for antidepressants which I have been on my entire life, with no real improvement on my moods before my period.
I did feel an improvement with my energy levels and aches and pains on levo but not enough to make a massive difference, any advise would be hugely appreciated.
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Susie25
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Some degree of central hypothyroidism is fairly common with Hashimoto’s
Low vitamin levels with Hashimoto’s plus levels changing up and down can result in unresponsive TSH
GP almost certainly incorrect stopping Levo
Dose probably should have been increased by 25mcg daily and retested again in another 2-3 months
How long since you had levothyroxine stopped?
Either retest now or wait 8–10 weeks after stopping
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
please add most recent vitamin results and ranges
Exactly what vitamin supplements are you taking
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
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 all relevant vitamins
Testing options and includes money off codes for private testing
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Hi Slow Dragon, thank you so much for all of wealth of information, much appreciated.👍 I bought some levo abroad just in case and have been carrying on with 50mg myself as I don’t feel it was right to take me off of it. The Drs have never tested my vitamins but when I have privately in the past I have noticed that the well woman plus tablets tend to keep everything in range, but I have to take them daily.
I have had to cut my days down at work because of my severe Pmdd so I am very tight on money for a private endo, but I have pretty much given up with the NHS. I think I will take your advise and try to increase my levo very gradually and see if that helps. My Dr wanted me to retest in 3 months, but I will instead save up and do it privately. I really don’t want to deal with them anymore.
I have tried gluten free in the past and it has helped a little, ie helped my bloating, but all of my other symptoms were the same.
I have started a selenium supplement to try and bring down my antibodies, and try a gluten free diet again.
Thank you so so much I really do appreciate your help.
Drs have never tested my vitamins but when I have privately in the past I have noticed that the well woman plus tablets tend to keep everything in range, but I have to take them daily.
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In days before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free, but contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
I also have high TGAB and TPO antibodies, so I would guess it’s hashi’s. Just can’t understand why my T4 got so low and yet my TSH was still well within range. I have read it’s almost unheard of to have both hashi’s and pituitary problems happening at the same time, but I feel a little lost with my results.
Central hypothyroidism with Hashimoto’s
Rarely diagnosed, rather than rare
Low vitamin levels will lower TSH, especially low iron/ferritin
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to NHS
Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
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 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.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to 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 may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines
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.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
Anything can be rare if you never test for it! And they believe that Central Hypo is so rare in itself that they never even teach about it in med school! But if they were to come and read on here they'd find it really isn't rare at all! And there's absolutely no reason why you shouldn't have Hashi's and Central Hypo. OK, it may not happen very often but we have seen it before on here. And it rather looks like you have it, too. If only they would stop their TSH worship and admit that it can be very flawed!
And your GP really is an idiot, stopping the levo when your FT4 got back inside the range. Didn't he realise that one you stopped the levo it would just fall again? Levo is not a cure for anything, it's thyroid hormone replacement, replacing the hormone that your thyroid can no-longer make enough of, for whatever reason. So what if the TSH becomes suppressed? It's not doing anything, anyway. I am continually amazed and horrified by their total lack of knowledge and logic. You don't need antidepressants, you need thyroid hormone!
Quite what you can do about it is another question entirely. You need an open-minded, intelligent endo who at least has basic knowledge of how the thyroid works - or doesn't - and isn't afraid to diagnose a double whammy. And it is important that he recognises both conditions because he needs to understand how your levels are likely to jump around with Hashi's, and how the disease will eventually kill off your thyroid completely. And he needs to know enough about the pituitary to realise that if it's not functioning correctly you are probably low in other pituitary hormones, too. Doing an ATCH test is all very well, if those doing it understand the resullts. Saying that the results are 'normal' but you have low cortisol is pretty meaningless. The question they were supposed to be answering is why the cortisol is low! Is it due to the adrenals themselves or the pituitary? But they don't seem to understand that. And next question is: what are they doing about the low cortisol, because that's bad in itself.
I can only suggest that you write a new post asking those that have been diagnosed with Central Hypo to PM you the name of the endo that diagnosed them, so that you can consult that endo.
Hi Greygoose, thank you for your reply. I feel as though it is pointless going through the NHS about thyroid problems and my Pmdd. These are both endocrine disorders but even the endo’s I have seen seem clueless. The response I received about my cortisol was that I must naturally be a very chilled and calm person, ha ha I could have killed myself laughing, I am almost the complete opposite to this.🤦♀️ I will write a new post about central hypo and thanks again for your help.👍
They do a full thyroid test which includes everything apart from rT3
I am having full thyroid bloods done again by this company and have asked if they will add this test on the rT3 I think you need this to see your converting ok?
They also do vitamins blood test which would cover all the ones you need
They do the whole thing ultimate longevity
Cholesterol hormones thyroid vits FBC ect 60 markers I did this one expensive but for a base line to my overall health it was very good
You can find a clinic which will take blood or you can do a home test
I used the clinic was efficient and got results back with information
Have also used Thriva home tests they do full thyroid screen and were pretty good
Thank you for your reply crystal. I too have used thriva, but it looks like you build your own test now which can work out expensive. I will have a look at one day tests and see if I too can get my RT3 tested.👍
Testing rT3 is expensive and pointless. It doesn't give you any information that you can't get from looking at the FT4 and FT3. They will tell you how well you convert.
There are many, many reasons for high rT3, and poor conversion is only one of them. And that happens when your FT4 goes too high. Susie25 has very low FT4 so, rT3 is irrelevant.
RT3 Was something a thyroid clinic asked me to add on to my tests, but maybe they just want more tests done which are not really needed. Unlike the NHS who only seem to test TSH. 😂
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Levothyroxine Dose and stable levels - help with results 
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