Low ferritin and tsh of 3 [0.5 - 4.4] on 37.5 m... - Thyroid UK

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Low ferritin and tsh of 3 [0.5 - 4.4] on 37.5 mcg levothyroxine

Caroline888 profile image
16 Replies

Hi everyone, I'm feeling fairly desperate! Can anyone please help? Just been to see my GP. He says my ferritin of 33 is fine, that no-one has a ferritin level of 70. When I protested he said to take a multivitamin with iron in it. I've been a vegetarian for over forty years which may have something to do with it. Will the 14 mg of iron typically in a multi be of any value? If not, what amount would you recommend, bearing in mind i am post menopausal?

The other worrying thing is that he considers my tsh of 3 [0.5 - 4.4] to be fine too. I gave him Professor Toft's article with the relevant part highlighted. He dismissed it! When pressed, he has increased my Levothyroxine by 12.5 mcg daily.

The only good thing to come out of the appointment was that he agreed to the test for thyroid antibodies when I next have my tsh measured.

Has anyone got any advice for me please.

Thanks for all your help and support. I think I'd feel really frantic if I didn't have all you experts to call on. This journey is just so very depressing :-( .

Best wishes

Caroline

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16 Replies
SeasideSusie profile image
SeasideSusieRemembering

I honestly don't know what anyone can do (other than self medicate) if GPs ignore the message in Dr Toft's article. It's shocking that doctors' knowledge of treating hypothyroidism is so poor that they don't consider patients have a point within the range where they feel well and keeping them higher than that level only adds to their feeling unwell. I'm sure that if the doctor themselves, or their spouse, were unwell with under-treated hypothyroidism due to their TSH just being 'somewhere within the range' then they'd move heaven and earth to find the solution. But of course, we patients are just faceless numbers to them.

Ferritin level of 33 is not fine, and your GP is a total **** if he thinks no-one ever has a level as high as 70. Don't bother with a multivitamin, the iron in it will mean nothing else can be absorbed.

If you were a meat eater then the best way to raise ferritin is to eat liver. If that is not acceptable then you will need a higher dose of iron than 14mg for your ferritin level. Most people buy the same as what is prescribed, which is ferrous fumarate. You can buy it from Amazon or some pharmacies, a box of 84. The elemental iron in each tablet is about 65mg. You could start with 1 tablet, increase maybe to 2 tablets. Take each one with 1000mg Vit C to aid absorption and help prevent constipation. Take iron 4 hours away from Levo and 2 hours away from any other supplements and medication as it affects their absorption. When you have finished the box, retest and see where your level then lies.

I would get Vit D, B12 and Folate tested, us Hypos frequently have low levels or deficiencies, and as your ferritin is low your other nutrients may also be low.

Caroline888 profile image
Caroline888 in reply to SeasideSusie

Thank you so much for your support and guidance. I didn't think 14 mg ferrous fumerate would be enough to significantly raise my ferritin level but wondered what was a safe amount for a post menopausal woman knowing that iron accumulated in the blood. I will do as you advise. When my level has reached 70, for example, would i need a maintenance dose as you do with vitamin d or is ferritin different in that respect?

My B12 and folate are above range. B12 856 ng/L [190.0 - 800.0]. Folate 22.4 ug/L [3.0 - 17.0], and my vitamin d is 108 nmol/L [24.0 - 167.0]. I take a multivitamin without iron suitable for seniors and 2000 i.U. Vitamin d with k2 MK-7 plus 200 mg magnesium citrate.

I'm really grateful for your help. I was despairing when I left the surgery but you have made me feel so much better. At least now I can do something to help myself even if it's only to improve my ferritin level!

Thanks again.

Best wishes

Caroline

SeasideSusie profile image
SeasideSusieRemembering in reply to Caroline888

You may need a maintenance dose. I raised my level from 35 to 119 just by eating liver. When I reached 119 I thought I might hold onto it and stopped the liver for 2 months then retested. I was shocked to find that it had plummeted to 39, so I've had to restart eating liver regularly. So really it depends. If you take 2 tablets a day, when you've reached 70-100 maybe drop down to 1 tablet per day then retest after 3 months, see what's happened to your level. If you're holding on to it you could try a couple of months without any at all and retest. If it drops, you will know that you should take some as a maintenance dose. You may be able to go onto a different brand with a lower amount.

Caroline888 profile image
Caroline888 in reply to SeasideSusie

Thank you, SeasideSusie. Since I will be dosing myself, I guess I have to get tested privately. Is that right?

SeasideSusie profile image
SeasideSusieRemembering in reply to Caroline888

Well, you could ask your GP but going by what you've already told us you will more than likely be refused.

I do a private fingerprick test for iron, I get the full iron panel as it's the same price as just ferritin with Medichecks

Iron status check medichecks.com/iron-tests/i...

Ferritin alone medichecks.com/iron-tests/f...

Caroline888 profile image
Caroline888 in reply to SeasideSusie

Thank you. I will do that! And thank you for the link.

Best wishes

Caroline

Clutter profile image
Clutter

Caroline888,

Your GP is stupid to tell you no-one has ferritin 70. If that was true then the range would stop <70. You can buy iron without a prescription. I suggest 210mg Ferrous Fumarate which should be taken with 1,000mg vitamin C to aid absorption and minimise constipation. Take iron 4 hours away from Levothyroxine and retest in 4-6 months.

12.5mcg Levothyroxine may be sufficient. You should have a follow up thyroid test in 6-8 weeks to check. If you are still undermedicated and your GP isn't helpful perhaps you could see a different GP at the practice.

Caroline888 profile image
Caroline888 in reply to Clutter

Thank you so much, Clutter, for your reply. I feel better already and particularly since you think the 12.5 mcg increase might be enough. I dread each visit to the surgery when I know i will have this constant battle with my GP. As you say i could see another doctor at the practice but suspect that they would look at my record on the computer and be guided by my previous GP's notes. He has tried to get me to take antidepressants (I didn't) and antacids for the discomfort at the front of my neck which I didn't as I was convinced it was thyroid-related. Had the discomfort daily for over 6 months prior to first doses of levothyroxine and this has now virtually gone, just occasional, very brief recurrences.

When I showed him Professor Toft's article, which he dismissed our of hand, I offered to leave it with him but of course he wasn't interested :( . It seems he knows nothing about thyroid issues and doesn't even want to learn.

Do I take just one of the 210mg tablets of ferrous fumerate each day?

If I couldn't post here and get such wonderful support, I would be really stressed about all of this. As it is, I feel less helpless. I'm so grateful.

Best wishes

Caroline

Clutter profile image
Clutter in reply to Caroline888

Caroline888,

1 x 210mg Ferrous Fumarate tablet should be sufficient.

Hypothyroidism is a life long condition so if you don't get better support from other GPs at your practice you should consider changing practice.

Caroline888 profile image
Caroline888 in reply to Clutter

Thanks, Clutter, I will order some ferrous fumarate right away. And the vitamin C!!

If that and the slight increase in levo don't result in good levels I might have to consider trying another GP in the hope that they are more knowledgeable and less dogmatic. Don't want to change practice but will if need be. Thank you so much.

Best wishes

Caroline

Nanaedake profile image
Nanaedake

Could you create a new post to ask for responses to show to your doctor from those who have increased their levo until TSH is less than 1 and have got well. The same for increasing ferritin level?

Caroline888 profile image
Caroline888 in reply to Nanaedake

Hi Nanaedake,

It would be wonderful if I could do that but I really don't think my GP is open to persuasion. I think he regards me as something of a hypochondriac and is set on disregarding everything I say. Today he actually said the tsh was the only thing that counted. He said he didn't take symptoms into account when deciding on an appropriate dose of levo. I was speechless but did manage to say I thought it should be the other way about.

My former GP, who was wonderful, retired (unfortunately for me :( ) and now I have this new one. Not an improvement.

Thank you so much for taking the trouble to reply. You, SeasideSusie and Clutter have all made me feel so much better. I'm really grateful.

Best wishes

Caroline

Well. lots of people have ferritin levels of 70 (I'm assuming he doesn't "believe in" haemochromatosis where ferritin is too high either), and TSH of 3 may be "fine" for a small percentage of people, but evidently not for you. He's just being partronising and trying to fob you off. Much as I'm sure you like to fight back and say, "Prove it, to either statement", it's probably not worth the stress. You could try taking him a copy of the newer Dr Toft Pulse article or just try to see another doctor. Why do they have to lie instead of just saying, "I don't have to treat you with those levels so I'm not going to".

Caroline888 profile image
Caroline888 in reply to Angel_of_the_North

Thank you for your support and for taking the time to reply to my post. I did take Dr. Toft's 2010 article to show my doctor but he dismissed it out of hand, saying the target level was too low. What can you do when your doctor's like this? As you say, I will probably have to see another doctor. Thanks again for your support.

Best wishes

Caroline

Angel_of_the_North profile image
Angel_of_the_North in reply to Caroline888

Not much you can do when a doctor thinks he knows more than an accredited specialist, except see someone else or self-medicate

Caroline888 profile image
Caroline888 in reply to Angel_of_the_North

That's just what I'm thinking!

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