picantaChicken : Hi I’m new, been following the... - Thyroid UK

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picantaChicken

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Hi I’m new, been following the treads of other people’s issues for some time and realise I too need help to as the Gps don’t give much help or advise. Makes me feel like I’m wasting their time . Still that aside I have just read a thread about HRT and Levothyroxine. I’ve been on Kevo thyroxine for many years and HRT patches and tablet progesterone for 10 years I’m 52. But have not been feeling well. Foggy thinking, forgetful, unmotivated and weakness in limbs disturbed restless sleep and fatigue. No stamina . I’ve been back over years to the doctor who has said my tsh thyroid lest ware perfectly low at 1.6 perfect. No other help offered asking could it be HRT ? Had increased dosage HRT. Which help for a short time then my symptoms persisted. Started having bad reactions to vaccines inflamed lymph nodes in arm pits. Swollen and painful =worry body big reactions to injections . Then the Gp phoned me out of the blue said my HRT needed lowering . Too high dose? 100mg. Went on 75mg. Within 3 months felt very ill overall fatigue mentally tired then my voice disappeared and not temperature of virus that I could tell. Then all lymph nodes up in neck armpits and groin. Phoned gp . Got call back . Asked for help something is wrong . Turns out I’ve been low in b12 for years. Apparently b12 is common with hypothyroid condition and can be made worse by HRT. I’ve been struggling for so long. No sure whether the drop in HRT lowered my estrogen levels but now I’m on b12 injections for the rest of my life. It’s totally changed to way I feel . I have stamina strength,less confusion and foggyness. It’s just worth checking you results as I believe they are tested together if you have hypothyroidism. They’ve aloud me to struggle for years and just not considered b12. It seems you have to be deficient and on your knees and quite frankly I though I was dying…I know that sounds over dramatic but I understand that is a common symptom. I’m not the only one who feels like this . With such a simple bit of advise from the doctor to take a b12 vitamin tablet might have been helpful. Now I’m on injections for the rest of my life !! Bittersweet🤯

Can anyone advise that now I’m taking b12 every 3 months, why my Tsh has gone up from 1.6 - 3.8 since last October . Aching shoulderand painful wrist slightly numb on pad of hand on l left side. I think I might need more b12 or do I need more Levo thyroxine ? So confusing and the doctors seem to not know much about b12 and thyroid problems. It’s as if I have to spoon feed them one thing at a time ?!!! So frustrating!

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14 Replies
Jaydee1507 profile image
Jaydee1507Administrator

Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.

Some members ahve found that raising ther B12 level has also raised their TSH. Perhaps your body can use the hormone in a different way now.

Most people feel well when their TSH is at or just below 1 so your TSH at over 3 is far too high.

Make appointment with GP and insist on a Levo dose increase.

Obviously your B12 level is a lot better now with injections but both B12 & thyroid hormone need other vitamins to work well.

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins. Have you recently or could you ask your GP to test levels of ferritin, folate & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...

There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.

Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.

Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.

PicantaChicken profile image
PicantaChicken in reply to Jaydee1507

Hi Jaydee1507

Thank you for all of these points to consider. Can you let me know more about positive antibodies I have had some private tests on thyroid done myself I’ve been down to London and had them done . If I send a picture . Can you advise on results . I’d really appreciate it . I had them on the 1st March. Before my next b12 injection .

Jaydee1507 profile image
Jaydee1507Administrator in reply to PicantaChicken

Positive antibodies mean that you have autoimmune thyroid disease, also known as Hashimoto's. It doesn't change your treatment but may expkain level fluctuations sometimes. You may also benefit from trying a strictly gluten free diet.

Do post a picture of your results. Be sure its readable. :)

PicantaChicken profile image
PicantaChicken in reply to Jaydee1507

TSH 3.52 mlu/l

Free T3 4.3 pmol/l

Free thyroxine 16.8 pmol/l

Thyroglobulin antibodies 14.8 iuml

Peroxidase. 14.9 iuml

Jaydee1507 profile image
Jaydee1507Administrator in reply to PicantaChicken

You haven't given the reference ranges for each test but your TSH is too high. It needs to be at or just under 1 so you need a dose increase.

Again, no range given for TPO antibodies but they look negative.

There is a different form of thyroid antibody - Tg (thyroglobulin) antibodies which the NHS dont test but you can test privately for those.

How much vit D do you take? Vit D should be tested twice a year until you know how much you need in each season.

NHS easy postal kit vitamin D test £31 via

vitamindtest.org.uk

You need folate and ferritin tested.

PicantaChicken profile image
PicantaChicken in reply to Jaydee1507

I’ll send the reference ranges tomorrow as it getting late . Thank you for answering .

PicantaChicken profile image
PicantaChicken in reply to Jaydee1507

Hi Jaydee1507

Just wanted to say I take Vit d3 I also take probiotics 50million a day. I also eat brazils for selenium and potassium in small quantities. I’ve considered coming off gluten. Perhaps I’ll just have to bite the bullet and get organised get on and do it! Thank you for your help ! Really appreciate it ! Thanks for your time !

greygoose profile image
greygoose

With such a simple bit of advise from the doctor to take a b12 vitamin tablet might have been helpful. Now I’m on injections for the rest of my life !! Bittersweet🤯

But doctors know nothing about B12. They can't tell you what they don't know. In fact, they know nothing about nutrients at all, they just don't learn about it in med school.

But, in any case, it wasn't because he didn't tell you to take a table that you're now on B12 injections. I expect you have Pernicious Anemia, don't you? PA is an autoimmune disease. It isn't caused by not taking B12 supplements. You probably had it all the time but because doctors know nothing about it, he didn't think to look or test.

I've got no time for doctors of any kind, I hate them all, but fair's fair. It wasn't his fault. And it's not good for you to carry on thinking it was and ressenting him. Best to just let it go. :)

PicantaChicken profile image
PicantaChicken in reply to greygoose

Hi Greygoose, thank you for your reply. I had an intrinsic factor test after my b12 injections and it registers as 2. I’ve had another intrinsic factor test and it remains as 2. To me after searching for info on line that it suggests I have a positive result for pernicious anaemia . I managed to get to de my Gp where she flatly says I haven’t got pernicious anaemia. She showed me the computer screen ? Saying see the computer says you don’t have pernicious anaemia. It made me question the info I found out on line.

I thought intrinsic factor over 1.53 AU/ml is positive . Perhaps I’m barking up the wrong tree? Any advise would be really helpful!

I am trying to move on. Thanks for your advise. Many thanks .

greygoose profile image
greygoose in reply to PicantaChicken

Hmmm... well, could be that she's wrongly interpreting what she's reading on the screen. But I don't know enough about it to comment. I suggest you go on the PA forum and ask them:

healthunlocked.com/pasoc/po...

PicantaChicken profile image
PicantaChicken in reply to greygoose

Ok Thanks I will ! Thanks for all of your help I really appreciate it . I have some private test results on my thyroid I had done beginning of March . Could I send you a clip my name removed for you to see and comment ?

greygoose profile image
greygoose in reply to PicantaChicken

Well, it would be better if you posted them on here so that others can see. :)

PicantaChicken profile image
PicantaChicken in reply to greygoose

TSH 3.52 mlu/l

Free T3 4.3 pmol/l

Free thyroxine 16.8 pmol/l

Thyroglobulin antibodies 14.8 iuml

Peroxidase. 14.9 iuml

greygoose profile image
greygoose in reply to PicantaChicken

Well, you TSH is much too high for someone on thyroid hormone replacement. Should come down to 1 or under. Can't comment on the other results because you haven't given the ranges, but they look as if they could be low.

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