Possible Central Hypothyroidism?? : Hi all I have... - Thyroid UK

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Possible Central Hypothyroidism??

Caroline369 profile image
25 Replies

Hi all

I have been having typical hypothyroid symptoms for about 8 years now, the fatigue and lack of motivation is the worst, and always cold. . I used to be so fit 😔I was diagnosed with Cfs but never saw an Endocrinologist. I was reading how low FT4 with a slightly raised TSH could indicate central hypothyroidism. Think I may fit that description. I had my GP bloods done April 2020 and am due them again in April. I have attached my historical blood results, would u guys mind giving your thoughts? I was on iron tablets alot of the time. Those with red dates are done by Medichecks. I'm planning on going private to see an endo in April after I get my bloods done again. Thanks

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Caroline369 profile image
Caroline369
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SeasideSusie profile image
SeasideSusieRemembering

Caroline369

Yes, below range or very low FT4 with normal, low or minimally elevated TSH can suggest Central Hypothyrodism. Not many doctors know about it or have heard of it, probably very few endos either. You'd need a proper thyroid specialist, not an endo who is a diabetes specialist.

Caroline369 profile image
Caroline369 in reply toSeasideSusie

Hi Seaside Suzie

Thanks for your reply. Do my bloods look like this could be a possibility?? I'm in Northern Ireland so think my Dr options are limited 😒 though I wonder about a zoom consult with someone in mainland UK. Wonder would that work?

SeasideSusie profile image
SeasideSusieRemembering in reply toCaroline369

Do my bloods look like this could be a possibility??

From what I can see, and it's difficult because there's so much in your picure and I can't zoom into just that column on my PC, you have one below range FT4, one at 12.8 but I can't make out the others. One would normally see an over range TSH with those levels. That's what I've based my reply on.

I'm afraid my link didn't work properly in my previous reply, I have deleted that and this is what I meant to put:

Your GP can look at BMJ Best Practice for information - here is something you can read without needing to be subscribed:

bestpractice.bmj.com/topics...

and another article which explains it:

ncbi.nlm.nih.gov/pmc/articl...

and another here:

endocrinologyadvisor.com/ho...

Check them out and present evidence to your GP.

I don't know anything about zoom consultations I'm afraid but if you can find a thyroid specialist willing to do this I can't see why it shouldn't work as a first step. However, your care may ultimately need to be under a doctor in N.I.

Caroline369 profile image
Caroline369 in reply toSeasideSusie

Oh sorry its hard to read, took photo off computer, the other FT4 results were 13.6 and 13.4. I wonder if that's low enough??

Thanks for those links, I've had a look and see how it refers to low FT4. I will defo show this to my GP.

Last year my Tsh was 2.79, is that classed as raised? I know it hit 3 in 2018.

I just want to stop feeling tired all the time and have a better memory too.

SeasideSusie profile image
SeasideSusieRemembering in reply toCaroline369

Raised is over range. Normal is within range. Minimally elevated is slightly over range.

Caroline369 profile image
Caroline369 in reply toSeasideSusie

OK, wasn't sure for definite, thanks for clarifying.

birkie profile image
birkie in reply toSeasideSusie

Hi seasidesusie 💗I was interested in what caroline369 was saying regarding her results, I have several results going back a number of years but mine were TSH suppressed or very below range, could this have been central hyperthyroidism?? On the tests in my records their are no T3 or T4 done, only later on about 2 years before I was diagnosed with hyperthyroidism which was toxic thyroid storm, eventually having my thyroid removed in 2019.(still struggling with meds on T3 only my last TSH was 19.32..been increased from 10mg to 15mg..bloods being done on Monday 6wks on 15mg) so I'll be interested to see how my TSH is looking now, I don't get on well with synthetic meds and I have colitis to I've just had a bad flare up that's lasted over 2 weeks bad inflammation and runny stools loads of horrid mucus.. Also about 2 months ago my PTH showed a raise with a slight raise in calcium 🤷‍♀️.. I totally agree that GPS and specialists really don't have much idea about thyroid conditions they nearly killed me, 😩😩

SeasideSusie profile image
SeasideSusieRemembering in reply tobirkie

birkie

I have several results going back a number of years but mine were TSH suppressed or very below range, could this have been central hyperthyroidism?? On the tests in my records their are no T3 or T4 done,

Central hypERthyroidism would have elevated FT4 and FT3 so it's a pity they weren't tested at the time. It seems like it could have been a possibility but without the FT4/FT3 results at the same time it's not possible to say with any certainty.

SlowDragon profile image
SlowDragonAdministrator

Looking like TSH rises as low iron and ferritin improves

healthunlocked.com/thyroidu...

Have you had ultrasound scan of thyroid

Vitamin D and folate need testing too

Central hypothyroidism

bestpractice.bmj.com/topics...

ncbi.nlm.nih.gov/pmc/articl...

endocrinologyadvisor.com/ho...

Caroline369 profile image
Caroline369 in reply toSlowDragon

Hi Slow Dragon, no never had ultrasound scan. Other than GP bloods that's it and then he gives me iron tablets when I show low.

SlowDragon profile image
SlowDragonAdministrator in reply toCaroline369

Private ultrasound £150 approx

20% of Hashimoto's patients never have raised antibodies healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

Caroline369 profile image
Caroline369 in reply toSlowDragon

Thanks for these links, yeah I might go down the ultrasound route, thanks for that suggestion, though will just wait until my next bloods and will probably get medichecks thyroid bloods done to cover what the GP doesn't. Thanks 😊

SlowDragon profile image
SlowDragonAdministrator in reply toCaroline369

Important to MAINTAIN optimal iron and ferritin

Not supplement, then stop, levels drop, start again

humanbean has lots of info on making sure to maintain optimal ferritin levels

Are you vegetarian or vegan?

Heavy periods are classic sign of being hypothyroid and will lead to low iron and ferritin

Look at increasing iron rich foods in diet

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin

healthunlocked.com/thyroidu...

Never supplement iron without doing full iron panel test fairly frequently to check iron not too high

Post discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

Caroline369 profile image
Caroline369 in reply toSlowDragon

Thanks so much for all this really useful info and links, I will defo read them all. Yes I am vegan so makes getting enough iron more difficult. I know it's important to maintain iron levels but this past few years the GP puts me on them for a month, checks bloods again and if OK stops them! In the past I was on ferrous gluconate for long periods of time.

I thought my hair had thinned a little at my temples and started taking a hair skin and nails supplement which I think helped with the hair regrowing. It had iodine in it, I wonder if that was what helped.

SlowDragon profile image
SlowDragonAdministrator in reply toCaroline369

As a vegan presumably you supplement B12 and vitamin b complex daily

What other vitamin supplements are you currently taking

Look at working out what dose ferrous fumerate you need as maintenance dose

Caroline369 profile image
Caroline369 in reply toSlowDragon

Oh that link to iron deficiency anemia and hypothyroidism is very interesting!!! Thanks for that link.

SlowDragon profile image
SlowDragonAdministrator in reply toCaroline369

Exactly......very relevant for many with low iron levels

humanbean profile image
humanbean

Between 4/3/2020 and 20/4/2020 your ferritin, iron and transferrin saturation improved tremendously. I'm amazed and envious that you can make so much of an improvement in just six weeks.

What were you taking and/or doing and/or eating to achieve this improvement?

Caroline369 profile image
Caroline369 in reply tohumanbean

Hi Human Bean, I have to say I made no other change except taking ferrous fumarate this time instead of taking ferrous gluconate. I was shocked at the result myself, so much so that I think I got someone else's results! I took ferrous gluconate for years and never had that improvement. This is the first time I took ferrous fumarate - I liked it because it helped my constipation! I wish I could tell you something of use but I honestly don't think I could respond to ferrous fumarate so well so quickly and honestly feel there was an error with my bloods or I got someone else's results.

humanbean profile image
humanbean in reply toCaroline369

A single tablet of ferrous fumarate 210mg has twice the amount of pure iron in than an individual tablet of ferrous gluconate 300mg. Whether that is enough to explain the difference in your reaction to the pills, I can't say. But if you were very under-dosed on the ferrous gluconate then who knows?

You can read more info on iron supplements that doctors in the UK can prescribe on this link.

bnf.nice.org.uk/treatment-s...

I must admit, I would want to retest those results too, in your shoes.

You could do this test privately with a finger-prick test and see what comes out.

medichecks.com/products/iro...

You can find discount codes here :

thyroiduk.org/help-and-supp...

When my iron and ferritin were very low it took me nearly two years to raise my levels with supplementing maximum dose of ferrous fumarate 210mg - one tablet three times a day. Nowadays I take a maintenance dose to keep my levels as close to optimal as I can., and after a huge amount of experimentation I've found that I need one tablet five times a week nowadays.

Caroline369 profile image
Caroline369 in reply tohumanbean

See your results took a long time to improve, also, that's what makes me wonder my result was wrong. I know there is a possibility but it was only one tablet prescribed once a day, even my pharmacist said it should be 3 times a day for 3 months. Thanks for those links, I have read most of them and will read the others.

Regarding supplements, I used to take a b complex with my iron and even when my iron finished but I never noticed any difference in myself taking it but I know I need to get a maintenance dose of iron sorted though in between iron prescriptions I did usually take a 40mg iron tablet.. Aw it gets tiring trying so many supplements, I even got my amalgam fillings removed and went off birth control and removed copper iud as read about copper toxicity. Outside of the thyroid possibility I just recently discovered I have a lump of a amalgam filling under in my gum, must have gotten in there from whe my wisdom tooth was removed. I need to get that removed just in case that's causing problem, I don't want it leaching into my body.

humanbean profile image
humanbean in reply toCaroline369

Yes, I took a long time to raise my ferritin and my iron. But my reaction was unusually slow. Most people would get from a low to a good level of ferritin and iron in 6 - 12 months, depending on how low their levels were to start off with.

And yes, one tablet of iron per day would be unlikely to have had any effect on me when I needed to raise my levels. I do need to take iron to maintain my levels.

Regarding supplements, I used to take a b complex with my iron

Taking a B Complex with iron isn't a good idea. The iron probably prevented you from absorbing much of the B Complex. Iron supplements can block the absorption of lots of things and should be taken separated by at least four hours from other supplement and medicines.

I have often read that vitamin C can help iron to be absorbed. So I would take iron and vitamin C together and take the B Complex at least four hours later. Thyroid hormones need to be taken away a minimum of two hours away from all supplements, and four hours away from some others. SeasideSusie lays out the rules in this link :

healthunlocked.com/thyroidu...

Regarding getting hold of iron supplements, they can be bought without prescription from UK pharmacies. The one I take is ferrous fumarate 210mg which usually comes in boxes of 84. You should get some change out of £10 - it isn't that expensive.

84 tablets is sufficient for taking one tablet, three times a day, for 28 days. That is maximum dose but obviously you can tailor your dose to your own needs.

jox1 profile image
jox1

're your cfs diagnosis - it is a normal finding for those with cfs that thyroid is often subclinically low ie not low enough for a mainstream diagnosis or intervention. Dr Sarah Myhill for example has done a lot of work in the area and has a lot of info on her website if you google. Some of the other things to evaluate for fatigue might be active b12 status and adrenal function

Caroline369 profile image
Caroline369 in reply tojox1

Hi Jox1, yeah I had read that before but forgot!! Thanks for reminding me. My B12 has always appeared OK but I do wonder about my adrenals, I did experience alot of stress for several years and several pet losses which hit me very hard.

Abbeyelle12 profile image
Abbeyelle12

I have hypothyroidism as well as RA and I haven't seen an Endocrinologist just my GP and they aren't keeping up with my blood work. I don't know how often it should be done but I think maybe I should find an Endocrinologist.

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