Hello...like one of your posts last week, I found myself being hassled recently to have a blood test. I explained that I’m shielding with my husband, which didn’t seem to make a difference. My GP has had a bee in his bonnet about my ultra low TSH. I had Medichecks test done before lockdown, and my T4 was around 25, but some days I can hardly open my eyes, with all the other hypo symptoms still worse in winter. It just occurred to me that this could be down to the pituitary? I take Levothyroxine 75/100mcg alternate days. I have always had terrible, searing headaches, with sweating and wipe-out exhaustion when I’ve been very active or under pressure, sometimes with vomiting. These are not migraines, but base of skull. I understand this could be secondary hypothyroidism...
I would so appreciate some guidance. I know my GP wants to just reduce my dose.
Thanks so much...again...
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BlueMoon65
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We really need some results showing TSH, Free T4 and Free T3 and reference ranges before we can say whether a pituitary problem is possible.
Based on your symptoms you could also look into how much cortisol you have. There is a lot of overlap between low and high levels of cortisol so it is impossible to guess whether you have either of these issues. If you guessed your cortisol was high and took cortisol suppressing supplements but your cortisol was actually low (or vice versa) then you could cause your health to really nose dive.
Yes, I’d be wary of that. I did wonder a few years ago whether cortisol was an issue, as I was pretty burnt out by a stressful job which I left in 2015. Reckon it’s a private endo next... Thank you!
I notice that you have Hashi and that seaside Susie suggested that you may have some conversion issue. Have you optimised your vitamin minerals as suggested.......this can help with uptake. If you have optimised these then it sounds like the time has come to try some T3 added in or a NDT. Its not a good idea to have your actual thyroid hormone over the range. So ideally a little less levothyroxine with some T3 or a ndt is likely to be the solution. Am not a doctor though!!!
I get similar migraines. Mine are mainly triggered by food sensitivities. After I cut out dairy, they reduced drastically. Now, I tend to get them if I over indulge in chocolate. I'm not sure if there is a connection to the thyroid with these types of headaches.
Weirdly, these aren’t like migraines, which I used to get frequently. Even more strangely, I have gone off chocolate and cheese since lockdown. I do have a small amount of milk. Will give this advice some thought ...thank you!
Yes they are more like a band around the head but mine usually then become one sided into a migraine. Everyone has different triggers so just a question of finding yours. Can also be hormonal.
Thanks for your help... Yes, I am taking D3 ( have just started on Pharma Nord 20 mcg daily), and B12 drops. My GP and my delivery service always supply TEVA brand 75 mcg Levo, but Accord 100 mcg. So I am taking a mixture.The headaches I get are just like the ones I had around 8-9 years ago, before diagnosis...not migraines ( which I used to get frequently years back), and they only seem to occur when I have had to rush around ( not that there is much pressure on a 67 year old who is shielding!) They are base of skull centred and extreme.
Re gluten.. I confess that I occasionally eat a small slice of bread which isn’t gluten free, but otherwise have been careful.
I have deferred getting a new Medichecks test as I think I’ll have to get to a private hospital for a blood draw, but realise it has to happen. I think a private appointment with an endo is next!
Sorry...I should have clarified: I’ve been taking D3 for three years, but found that some tablets didn’t improve tested levels ( GP test).; I then tried sub-lingual drops. Again, there didn’t seem to be any improvement in levels. I know we don’t advertise brands on here, so apologies for mentioning Pharma Nord. But they are involved in trials to gauge whether D3 has an impact on the immune response to COVID, and so I figure that mention of their product is on a par with the mention of different vaccine brands.
A low TSH coupled with low thyroid hormones levels could indicate a pituitary issue. However, your TSH level could be low because you are medicating thyroid hormone replacement and whether it be secondary or primary hypothyroidism the treatment would remain the same.
Without ranges it is impossible to assess thyroid hormone levels or if you are optimally treated. If you feel your meds aren’t making you feel better, try looking at iron & vitamins as adequate levels are needed in making meds work well.
I would say it’s more likely your low TSH is caused by your high T4.
I would suggest one thing at a time.
My T4 was around 22 and sometimes just over but I didn’t feel well abs my TSH was close to zero. My ninth (yes 9th) Endo finally saw sense and put me on T3 trial and it’s been revolutionary!
Would suggest you reduce the Thyroxine a bit, wait 6 weeks any get retested.
Once you have a more normal TSH and T4, you can look at your conversion of T4 to T3 and decide if you would benefit from a trial.
Note if you have too much T4 and your TSH is suppressed then your conversion of T4 to T3 will be depressed anyway by the low TSH. Hence you need to do one thing at a time to have the data points to guide your changes.
You could try a more gradual change, perhaps alternate days go for your current dose and 75mcg. That way you won’t have such a big drop as I suspect 75mcg may be too little and then you will feel crap and need to wait under 6 weeks as you Re-raise.
I already take 75 and 100 on alternate days, as instructed by my GP two years ago. Prior to that I was on 75 every day and still had visual issues, no energy, muscle weakness, Pilsbury Doughman eyes! ( Dose reduced by a new GP, from 100 to 75, to 50, to 25 over nine weeks left me in a bad way).In nine years I’ve never been referred to an endo. I don’t know whether to be aggravated about this, as so many patients on here say they still don’t get much focused help. It’s remarkable how ‘trivialised’ thyroid issues seem to be, in my experience, by GPs.
In my last job, 3 out of nine staff had hypothyroidism. The other two were under a different Clinical Commissioning Group and different hospital. They had a routine annual endo appointment regardless of their wellbeing.
I have those eyes too, but they’ve resolved now I’m on T3 and sleep better!
The point I was trying to make was rather than drop your dose by 25mcg drop it by 12.5mcg. I find 25mcg too drastic a drop.
Push your GP for endo referral to one of those on the Thyroid UK list of thyroid specialists.
If that fails write a formal letter setting out your reasons and symptoms.
If that fails change your GP practice to one that’s open to doing referrals.
I’ve had my mother referred to the NHS clinic at Wycombe Hospital and specified the doctor that we need at that clinic who is a thyroid specialist. You can use the Thyroid Uk list to find one near you. Right now all clinics seem to be virtual so you may not need to travel anyway.
You may also want to see a pituitary specialist. There is a chap who is very good at this and also happens to be the queens Endo. I think he still has an NHS clinic and also does private treatment in London. I’m sure you can Google him based on that description. He also shares his first name with our second in line to the throne. His surname sounds like something you collect lawn clippings with.
Whilst I’m not denying that you could have pituitary issues, regardless you are most likely overdosing on the Thyroxine so the first step will always be to reduce that.
It will then also help you determine if in fact you do have a pituitary issue
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