CFS possibly hypothyroid?: I've had CFS for, well... - Thyroid UK

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CFS possibly hypothyroid?

Jennywren7
Jennywren7

I've had CFS for, well, a very long time (20+yrs) and it's certainly not getting any better. The past 4 years have been a huge relapse and without doubt the worst I've ever been. Whilst I completely agree that ME/CFS is a thing in its own right, I'm just still not ready to just accept that this is it and so still looking for other possible answers/causative factors.

In May after some blood tests I started on an optimum B12 protocol with assistance from a very knowledgeable B12d group, some improvement has been made with some symptoms, but the exhaustion never budges.

My mother has long had a theory that she has a thyroid issue as she has many of the same symptoms but drs have always told her she's in range and all fine, and similarly when I've had mine tested periodically they've said the same.

The B12 has opened my eyes to what 'normal' means on a blood test and so I'm back to reviewing the thyroid again because I'm not convinced that it isn't a problem. I attach a copy of my most recent results and the symptom checker from the Thyroid website so you can see where I am.

Any feedback would be most appreciated. Thanks for reading

12 Replies
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Hi Jenny,

I may be in the minority on this site but I don't think your results are definitive either way.

It's a separate question whether you're asking; do I have enough thyroid hormone for it not to be a main cause of my symptoms? vs will I feel better with more thyroid hormone?

Have you tested everything else: vitamin D and A, cortisol, acth, androgens (testosterone, estrogen), electrolytes, ferritin (and rbc), blood sugar (insulin, a1c, fasting blood sugar), plus many more?

SeasideSusie
SeasideSusieAdministrator

Jennywren7

Your thyroid hormones - FT4 and FT3 - are quite low in range, but your TSH is where one would expect to see it in a "normal healthy person", that is below 2. This doesn't mean that you don't have a problem though, because none of us are tested when we are well to get a baseline, we can't know where our FT4/FT3 are for us to be well.

Your antibodies are nice and low and don't show any sign of autoimmune thyroid disease (aka Hashimoto's) with those results. However, antibodies do fluctuate so you'd need more than one test to know. Also, you can have Hashi's without raised antibodies apparently, so that makes it even more complicated.

As you have tested B12 and are addressing a problem there, you need to test Folate as Folate and B12 work together. Also, when taking B12 it's recommended to take a good B Complex as well to balance all the B vitamins. Is this part of your B12 protocol?

And because you have a problem with B12, it's possible that other nutrients aren't optimal so it's recommended to test:

Vit D

Ferritin

Low ferritin in particular causes fatigue (and other problems).

If ferritin is low then a full blood count and an iron panel will tell you if you have any form of anaemia.

I think this would be a good next step for you.

Hi SeasideSusie, thanks for your reply.

Yes the B12 protocol includes a high dose B complex, and additional folic acid, although I do struggle with the latter as my body really not does enjoy it. Recent blood test for folate was showing at a good level (>19.8).

Vitamin D was low some years ago and was treated and now in the optimal range.

Most recent ferritin test was not so good and now at 13 (range 13-150) so I'm sure this is not making me feel great and am I working on addressing it. However I don't feel any worse really than I did when it was higher, so although I appreciate it's not helping me I don't think it's the root cause.

Had a FBC last month (same test as the ferritin) and all red blood cells are in range with nothing jumping out as wrong.

SeasideSusie
SeasideSusieAdministrator in reply to Jennywren7

When you had your FBC, what were the MCV/MCH/MCHC results?

Did you have an iron panel as well?

How are you addressing the low ferritin?

MCV 92 (81-98)

MCH 32.1 (27-33)

MCHC 349 (300-350)

No I didn't have an iron panel.

I've gone back on the Spatone which has worked well for me in the past.

SeasideSusie
SeasideSusieAdministrator in reply to Jennywren7

Your MCV isn't suggeting iron deficiency anaemia, it would have to be low for that.

With a bottom of range ferritin, you could do with knowing if your serum iron is at a good level and an iron panel would tell you that.

An iron infusion would raise your ferritin quickly - within 24-48 hours - whereas tablets, and Spatone, will take many months.

For thyroid hormone to work (that's our own as well as replacement hormone) it's said that ferritin needs to be at least 70, preferably half way through range.

You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, also liver pate, black pudding, and including lots of iron rich foods in your diet

apjcn.nhri.org.tw/server/in...

Are you taking a maintenance dose of D3 and it's cofactors to keep your Vit D level optimal?

So if the serum iron is ok is the iron transfusion still the best plan?

I'm just going back through old bloods and I don't think ferritin has ever been 70! Take on board your point with ref to thyroid needing it to be higher.

For the Vit D I have D3 with K2

SeasideSusie
SeasideSusieAdministrator in reply to Jennywren7

So if the serum iron is ok is the iron transfusion still the best plan?

I don't know how they deal with bottomof range ferritin if serum iron is OK. My ferritin was low but the rest of the iron panel was pretty good, I ate liver and it raised my ferritin and the rest of the iron panel was fine, but my ferritin level was never at the very bottom of the range like yours.

For the Vit D I have D3 with K2

What is your current level? When supplementing we should test twice a year to ensure we stay at the recommended level - 100-150nmol/L [40-60ng/ml] according to the Vit D Society, 125nmol/L [50ng/ml] according to the Vit D Council.

Do you also take magnesium? We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.

I've just sent an enquiry to our local private hospital to ask about iron transfusions, we'll see what they say. I certainly like the idea of feeling better sooner!

The Vit D has not been tested in recent months, so I will get it done again soon but it was over 100 last time.

I'm not taking magnesium actually, I did have it tested last year and it was 0.88 (0.66-1.07) so I thought that was ok. I have regular Epsom salt baths so understood I would be absorbing some through that, but I'm not against adding some extra in if it would be beneficial.

SeasideSusie
SeasideSusieAdministrator in reply to Jennywren7

Magnesium testing isn't that reliable apparently. However, your Epsom salts baths may be enough. I take magnesium taurate as I have a heart problem, and some magnesium citrate every other day as it helps with a bowel problem.

Hopefully the baths are doing the trick then!

Thank you for taking the time to talk all this through with me this morning, it's been really helpful :-)

shaws
shawsAdministrator

I think you'll find the following helpful, from TUK.

thyroiduk.org.uk/tuk/testin...

It would be 'excellent' if in these 'modern times' that doctors knew about clinical symptoms, as they did before the introduction of blood tests and levothyroxine.

thyroiduk.org.uk/tuk/about_...

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