Any thyroid experts? Help needed

[SinkGirl]

I’ve had textbook symptoms of hypothyroidism for years now, first experienced 11 years ago when I was on a drug that works on the pituitary gland. I was diagnosed with ME. Every time I had blood tests I was told it was “all normal” and couldn’t be my thyroid.

Paid for a more in depth private thyroid test in September and my TSH was normal but other levels were fairly low given that my TSH was normal:
FT4 12.5 (12-23)
T4 77.6 (66-181)
FT3 4.55 (3.1-6.8)
TPO 12.7 (0-34)
TGAB 13.2 (0-115)

I did a lot of research and I was concerned about the possibility of central hypothyroidism since it can cause similar results. Met with my GP multiple times and he even spoken to an endocrinologist but they both said that nothing could be done while my results were in normal range.

I repeated the test in March as I was feeling worse but the results were totally normal
TSHb2.3 0.27-4.3
FT4 15.6 12-23
T4 123 66-181
FT3 4.95 3.1-6.8
TPO 16 0-34
TGAB

Sorry those results are a garbled mess...

Here’s the one in March
TSH 2.3 (0.27-4.3)
FT4 15.6 (12-23)
T4 123 (66-181)
FT3 4.95 (3.1-6.8)
TPO 16 (0-34)
TGAB 10 (0-115)

And the ones I got today
TSH 5.95 (0.27-4.2)
FT4 15.7 (12-22)
T4 91.2 (59-154)
FT3 6.53 (3.1-6.8)
TPO 16.1 (0-34)
TGAB

I think you need a referral to an endocrinologist who knows what he is doing. The key words in your OP are'a drug that works on the pituitary gland and you need someone who can unravel what that treatment was and how it relates to what is happening now.

Your TSH is labile, your FT4 is unacceptably low, but your FT3, which was mid-range in March, now looks pretty good, so your results are not what we might expect to see.

You are very vitamin D deficient, which will make you feel awful. Google 'vitamin D prescribing guidelines + [where you live] and then go and see your Gp to demand your loading dose. Where I live you'd be getting 50,000 iu a week at least. You can sort your folate out by diet, or by a methylfolate supplement ( not bog standard folic acid).

If you are symptomatic and your TSH is out of the lab range, your GP may be prepared to offer a trial of thyroxine. You should press for this. Ask fro an initial dose of 50mcgs and get re-checked every six weeks until you feel well.

Lots of advice from ThyroidUK, on their website and on their forum on www.healthunlocked.com

Thank you so much, I really appreciate your help and advice.

The drug I was on from 2007-2009 was zoladex, which is a GnrH analogue (I took it for endometriosis, it’s only licensed for six months use and I wasn’t on HRT, and I’ve had serious problems ever since). There’s very little information out there about connection to thyroid issues but I’ve found a few mentions. I’m also on morphine, have been for over 10 years, which can also cause central hypothyroidism apparently, but then now my TSH has risen I guess it may not be related to the medication stuff after all.

When I see my GP I will definitely ask about a referral but whether they’ll agree or not I don’t know. I’ll definitely make sure I get the vitamin D (wondering if I should just get some and start now until the appointment) and will look at the folate stuff (Don’t really understand the difference between active B12 and serum folate - the feedback with the results said I should get red blood folate checked to see if it’s significant but can’t really seem to find out what that would mean).

Have posted on the Thyroid U.K. forum too.

Thanks again

I have hashimotos and I've also been severely vit d deficient more than once.
I'd start with sorting out your vit d levels with a high dose script from your Gp before doing anything else. With levels that low do not underestimate exactly how grim you can feel. I felt at deaths door when mine was 14, could barely climb the stairs.

So sort that before moving onto the thyroid.

With TSH of 5.95 you should be on medication. I'd be more concerned at how your results are varying, on that basis you should be referred to an endocrinologist.

You mention the GnRH analogue. Like you I was on one for a few years and have had endless problems since - hypothyroidism, arthritis, and I lost a pregnancy due to an ectopic pregnancy. I don't have any advice but seeing someone with similar issues brought tears to my eyes. I have a feeling in years to come this will come out as another medication that is being prescribed without being properly researched.

Thank you so much, I’m so grateful for the feedback, and so worried that they still won’t agree to treatment (why the hell is the cut off here TSH of 10.0 when it’s less than half that in other countries? It makes me furious).

First thing I will do is get the vit D sorted - it actually makes me feel hopeful that I might be able to feel better than I am now (I have 19 month old twins and it has been so hard to take care of them). Looks like I need a whopping dose at this level so I guess this needs to come from a doctor?

I’m also worried they might refuse to take the private test results and insist I repeat them, and since my thyroid levels seem to vary who knows what that would show.

Bombardier I’m so sorry you’ve had problems too. It’s caused me so many problems and almost cost me my marriage (every time my hormone levels change at all - the pill, breastfeeding etc - my libido completely vanishes and I can’t bear to be touched at all, let alone anything else). It did help for a while but I wish I’d never heard of the stuff. Hindsight is a wonderful thing.

Yes you need prescription dose vit d, otc will never work at that level.
I would think your Gp will accept your private vit d test because it's a costly one to have done on the nhs so you've saved them some money.

Thanks, I will wait and not waste my money! Just eager to feel better.

I’m so frustrated that in most other countries I’m well above the point where hypothyroidism is diagnosed, and yet here I have to hope my GP is sympathetic and knowledgeable. What a nightmare. I’m sure it has nothing to do with the fact that anyone diagnosed with hypothyroidism is entitled to free prescriptions... (cynical, me?)

As well as proper high dose vitamin d replacement you should get folic acid on prescription as need a higher dose (5mg) rather than the OTC dose (400mcg)

As your blood test results changed when you used a different lab/supplier I'd be tempted to test again to make sure the most recent are actually accurate. I use Blue Horizon and found them to be good and reliable. They always give similar results to when I see the GP.

If your pituitary may be damaged I would suggest testing other pituitary hormones too. Although it is possible to have only central/secondary hypothyroidism with no other hormones affected.

If you want a definitive answer on central, you can have a TRH test which involves pumping you with TRH hormone and seeing if your TSH responds or if there's a delay. They don't often do this test but I researched it a lot and went private and told my endo that's what I wanted. Turned out (much to his surprise) I was right and I did. My TSH was always between 1-2.5 and my FT4 was always bottom of range or just under.

Your latest bloods don't suggest central hypothyroidism and neither do the ones before to be honest. But i would think it's worth a retake if you changed labs. And a TRH test will always definitively rule it out for you if you have any doubts.

To be honest, I’m more inclined to distrust the previous results - the first company I found myself, the one I used this time is recommended by Thyroid U.K. and lots of patients... but I agree, it seems to be a big change in a short space of time. The middle results I was suspicious of at the time - I’d been checking for days whether my sample had been received and apparently it hadn’t, and then within an hour the results were up, which I found a bit weird.

Anyway, I think you’re right and I should retest but don’t have much money spare to be honest! Might have to wait a little while.

I suspect my GP will want to treat the vitamin deficiencies first and then repeat the thyroid tests before doing anything, which I can understand but it’s frustrating after banging this drum for so long.

I suspected CH based on the first one compared to previous tests because my TSH had gone up very slightly but my FT4 had gone down and was right at the bottom of the range. Did some research and read up on CH - made the connection with my medications and figured it was a possibility. If the recent results are accurate then I don’t think it can be that at all.

SinkGirl I see from your post that you have toddler twins. I also have twins (and another) and I'm convinced that a lot of my thyroid problems were triggered by IVF (from which twins conceived). The high doses of hormones may have caused it, or possibly the twin pregnancy itself.

Sleep deprivation and the emotional toll of having twins as well as the joy (and mine have given me so much joy) can mirror all sorts of other symptoms but I think it sounds as if you definitely DO have a thyroid problem which might start getting worse

BUT the vitamin D is incredibly important to remedy and will make a massive difference to how you feel in yourself. So before you take exercise or try and lose weight or do self care or sleep training or anything that people will so patronisingly suggest, TAKE A BIG BOOSTER OF THAT, stay outside as much as possible with the twins 11-3 don't slap on the suncream. It will really help. My holidays for 16 years were essentially spent in countries with low UV like Ireland in August or Cornwall, and once they were older I really started feeling the lack of sunshine (when I was pushing them around things were better, I just picked up a lot of sunshine day to day on way to nursery and school run)

Running has been a pleasure recently but don't attempt it until you have your thyroid sorted, or it will just add to your exhaustion and feelings of not being good enough, it did with me when I did it at the wrong juncture. Now I can run better and it makes me feel quite energised, but I still don't subscribe the the idea that running is the cure all to life's ills..there are many many other fun ways to exercise with small children.

You don't need to go to the GP to treat vitamin D deficiency at this stage, you know your levels are very very low. As a starting point just take 20,00O a week (that's two big HealthAid tablets of 10,000 A WEEK) really it won't do you any harm.

You can google Imperial College Guidelines on Vitamin D dosage to get an overview on supplementation. Recommended for endocrinologists. Not a pressure group, but IMPERIAL COLLEGE, so very trustworthy source.

the acronym is ICE Imperial College Endocrinology.

They give details of the appropriate loading dose and the recommended brands etc. And explain difference between loading dose and maintenance dose.

Patients who are overweight are more likely to need more Vitamin D than the general population, surface area to absorb vitamin d from sunlight ratio to body weight, There will be many reasons why you are deficient, and I think childbirth and breastfeeding can exacerbate.

Thanks Nettle - I didn’t have IVF but due t endometriosis I’ve been constantly on hormone treatments basically since puberty. Spent a long time on zoladex and that’s when things really went awry.

I will definitely have a look into Vit D supplements before I see the doctor in a couple of weeks. I agree it’s important to get that sorted ASAP

honestly, I feel like a completely different person. I'm still fat, I still don't go to the gym etc, my children are still difficult, there are all sorts of issues, but essentially I feel well in myself most of the time.

Any time I’ve been to the doctor since they were born I’ve had the head tilt and “having twins is hard”. Yes you’re right, it’s fucking hideous at times, but that doesn’t explain why I can’t even walk to the toilet in the night without hideous pain, why I’ve had a large section of my back that’s agony and has altered sensation for over a year, or palpitations, or acne, or difficulty swallowing, or hair loss, or weight gain despite never stopping moving and not having time to eat much, etc etc etc. The other twin mums I know are all back at work and I can barely leave the house. I feel for my poor boys who are suffering because I can’t take them out enough. And if it’s due to twins, what’s the excuse for the previous 8 years?! I just want to feel well again, I can barely remember how that feels to be honest.

yes, I had the hideous pain on walking when first waking 9can hardly feel my feet, and numbness in hands etc)and the bad back pain. However I put the back pain to the increased stretchiness (cannot remember the precise medical word for it something beginning with L?) that prepares you to give birth, after wards your ligaments are much more susceptible to damage. That has now completely cleared up (two years in, pretty well resolved, and I think helped by all the lifting I did ironically and walking upright rather than driving)

The joint pain is as you say could definitely be thyroid.

It really does sound like you need an Endo's overview to put all the pieces of jigsaw together.

I've had difficulty swallowing yet Endo said I had no sign of a goitre AT ALL, and I believe her, sometimes swallowing can be definitely symptomic of anxiety, and anxiety could be caused by all sorts of things.

There are all sorts of factors that affect our health some of them external and some internal, one of the theories about thyroid and CFS is that is in fact triggered by stress or brief infection/traumatic situation. It is a bit chicken and egg, but definitely don't exclude thyroid, as you say. But it is never the WHOLE STORY. Pregnancy and childbirth and life with small children is a traumatic experience, so it is not surprising gps do associate symptoms with this "first" cause. Even if ironically the first cause means there is a second more obvious and treatable condition, like hypo or hyper thyroidism that goes unrecognised.

My kids are 16 x 2 and 18 btw, so it is easy for me to speak glibly

SinkGirl, did you have your folate tested before? Because in my view, that's the most important result of your test as shows to be very low. Low folate can lead to anemia, and anemia will cause all the symptoms you are describing. People associate anemia with low iron level and low haemoglobin, but you can suffer from anemia even with normal level of red blood cells if these cells are the wrong size for instance.

Even though your tsh is now above the normal level, which could indicate hypothyroid, your FT3 levels are on the high end of the scale that would indicate the opposite. It is all very confusing.

Did previous blood tests looked at haemoglobin, mcv and mch/mchc?

I do think you should focus on the folate though and start taking supplement and see if that helps.

The last blood tests I had done that involved other things were by the GP last June. At that point folate, B12 etc were all in range (although some were lower end), as were almost all the blood counts except MCH which was slightly above normal range (33.7)

Serum vitamin B12 level 327 ng/L [190.0 - 660.0]
Serum ferritin level 32.0 ug/L [24.0 - 400.0]
Serum folate level 2.8 ug/L [2.1 - 26.8]

Oh and I’ve just found that back then my TSH was 1.3 and my FT4 was 14. That’s all the thyroid stuff they tested at that point.

well your TSH has certainly shot up if it has gone from 1.3 to 5.95 in one year. You could ask to be tested yet again and then the rise in itself might be proof that something is going on.

Yes, the increase is alarming to me
June 17: 1.3
September 17: 2.02
February 18: 2.3
May 18: 5.95

I’m wondering if my thyroid has been struggling on and is now giving up the ghost, so to speak.

Regardless, I think I definitely need to repeat this test - either to show it’s a discrepancy (and even then, if it’s jumping up and down that can’t be good) or see if it has gone up even more. I think it’s probably best to take the Vit D loading dose, along with folate (and B12 too as I don’t think that’s optimal) then retest all of this after the 12 weeks is done. That way I can check whether the levels are sorted and see how my thyroid is doing.

The more I look into this today, the more bizarre my levels seem (especially the FT3 with the TSH and FT4 as it is). I can’t even begin to fathom what it might be. What I really need is a proper thyroid expert, and what I’ve been reading today suggests that most general endocrinologists are likely to be no more help than my GP. How I find someone like that, I have no idea.

except MCH which was slightly above normal range
I thought that might be the case. A high mch is most commonly caused by low B12 or Folate but can also be related to problems with the thyroid, although usually more in terms of hyper than hypo. My mch is also high, at my worse, almost 35 and it made me feel absolutely dreadful with many of the symptoms you experience.

Your thyroid does seem to do odd things. I was going to suggest that maybe there was an indication of Hashimoto, but normally you would expect your antibodies to be high in that case, when yours isn't.

I also agree, do your own research and print information before you see your GP. I have found the ones I've seen normally quite open to looking at it.

Here's something about high mch:
www.medicalnewstoday.com/articles/318192.php