Results help please: I have just joined I have... - Thyroid UK

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Results help please

LucieC profile image
20 Replies

I have just joined

I have been taking thyroxine since 2014 and here are latest results, symptoms are goitre, dry skin, ears ringing, deafness, muscle cramps, stiffness, low libido, brain fog, poor concentration, tiredness, dizziness, heavy periods, hard stool. Any help would be appreciated I take 125 mcg thyroxine and 5mcg t3

TSH 5.02 (0.2 - 4.2)

Free T4 16.1 (12 - 22)

Free T3 3.4 (3.1 - 6.8)

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LucieC profile image
LucieC
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SeasideSusie profile image
SeasideSusieRemembering

LucieC You are undermedicated. Most treated hypo patients feel best when TSH is 1 or below.You need an increase in your meds and as your FT3 is so low in it's range compared to where your FT4 lies in it's range, an increase in T3 would probably be best.

Some of your symptoms are indicative of low nutrient levels. If you've had the following tested, please post the results with reference ranges for comment, if not it would be a good idea to get them tested either through your GP or privately:

Vit D

B12

Folate

Ferritin

Have you had antibodies tested?

LucieC profile image
LucieC in reply to SeasideSusie

I have had antibodies tested but I don't know what they mean

Thyroid peroxidase antibodies 241 (<34)

Thyroglobulin antibodies 298.3 (<115)

When I get over range TSH I feel quite hyper. I will post the vit and min results in another post

SeasideSusie profile image
SeasideSusieRemembering in reply to LucieC

LucieC The high antibodies mean that you are positive for autoimmune thyroid disease aka Hashimoto's, which is where antibodies attack the thyroid and gradually destroy it.

You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members enormously. Gluten contains gliadin which is a protein thought to trigger antibody attacks.

Gluten/Thyroid connection - chriskresser.com/the-gluten...

Supplementing with Selenium L-selenomethionine 200mcg daily and keeping TSH suppressed also help reduce antibodies.

Hashi's Information:

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

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

I don't know how you can feel hypER with a high TSH. Low TSH is usual in hypERthyroidism and high TSH is usual in hypOthyroidism.

LucieC profile image
LucieC in reply to SeasideSusie

Ok thanks when I was first told I had hypothyroidism I remember exercising and I was sweating a lot. I was quite thin at the time as well but was really tired and constipated

SeasideSusie profile image
SeasideSusieRemembering in reply to LucieC

The Hashi's means that your symptoms will swing from hyper to hypo as the antibodies wax and wane, it's the nature of Hashi's. Check out the links to understand about Hashi's and how to help yourself.

LucieC profile image
LucieC in reply to SeasideSusie

Ok thanks I will. I have adrenal problems as well and they were identified with 2 saliva tests. I have gone to the doctor about these results but they couldn't offer me any input on them

SeasideSusie profile image
SeasideSusieRemembering in reply to LucieC

I'm not surprised, presumably it wasn't an NHS test? They don't understand about the saliva test. If your GP can't help then ask for a referral to an endocrinologist, who will probably do their own adrenal test.

LucieC profile image
LucieC in reply to SeasideSusie

No they were both done by Genova. I have had a baseline cortisol test which showed low-normal cortisol then they did a short synacthen test but I was eating and drinking throughout and someone told me I shouldn't have done that. I see a new endo next month but I don't know if he will repeat it again. Is it ok to mention his name on here?

SeasideSusie profile image
SeasideSusieRemembering in reply to LucieC

Yes, it's OK to mention names, but if you want any feedback it has to be by private message.

LucieC profile image
LucieC

I take ferrous fumarate 200mg once a day because if I take more than one iron tablet my stomach can feel heavy. I also take 5mg folic acid for folate anaemia. I take 800iu for vitamin D as well

Ferritin 17 (15 - 150)

Folate 3.5 (4.6 - 18.7)

Vitamin B12 204 (190 - 900)

25 hydroxy vitamin D2 <6.0

25 hydroxy vitamin D3 20.2

Total OH vitamin D 20.2 (<25 severe vitamin D deficiency. Patient may require pharmacological preparations)

SeasideSusie profile image
SeasideSusieRemembering in reply to LucieC

LucieC

Ferritin 17 (15 - 150) - this needs to be at least 70 for thyroid hormone to work properly, better is half way through range and best for females is 100-130 I've read. One Ferrous Fumarate isn't really enough. You could explain to your GP about the problem you're having and see if you can have an iron infusion. Alternatively change to Iron Bisglycinate which is more gentle but has less elemental iron, you'd have to buy that yourself. Take each iron tablet with 1000mg Vit C to aid absorption and help prevent constipation. Also, start eating liver once a week as this is very good for raising ferritin. It can be a meal (about 120-150g liver) or mince it and put in casseroles, curries, cottage pie, bolognese sauce, etc.

....

Folate 3.5 (4.6 - 18.7)

Vitamin B12 204 (190 - 900)

You really need to take these two results over to the Pernicious Anaemia Society forum here on Health Unlocked for further advice. Have you been tested for Pernicious Anaemia? Have you been offered B12 injections? Normally, where there is a need, B12 injections are started before folic acid I believe. The PA forum will put you right.

healthunlocked.com/pasoc

....

Total OH vitamin D 20.2 - I'm afraid 800iu D3 will not raise your level, it will hardly raise the level of a sunburnt flea. You need loading doses. If your GP prescribed the 800iu then Google for the Vit D Deficiency treatment guidelines for your area and ask him to follow them. Alternatively buy your own. Get some D3 softgels 5000iu like these bodykind.com/product/2463-b... and take 10,000iu daily for 8 weeks then reduce to 5000iu daily. Retest in May and if you've reached the recommended level of 100-150nmol/L reduce to 5000iu alternate days as a maintenance dose.

When taking D3 there are important co-factors needed

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and K2-MK7 directs it to bones and teeth rather than arteries and soft tissues. D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 should be taken four hours away from thyroid meds.

Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds

naturalnews.com/046401_magn...

LucieC profile image
LucieC in reply to SeasideSusie

Thanks I have been tested for intrinsic factor antibodies a month ago but the results haven't come back yet and I haven't been offered any B12 injections. Yes everything I supplement has been prescribed for me

SeasideSusie profile image
SeasideSusieRemembering in reply to LucieC

OK, well ask on the PA forum for advice about your B12 and folate as I do believe that B12 injections should be started before folic acid supplements if they're needed and your B12 is very low.

It's up to you what you do about the supplements you've been prescribed, but your levels won't increase much, if at all, on the doses you're currently taking.

LucieC profile image
LucieC in reply to SeasideSusie

I am happy to make necessary changes but I can't believe doctor has given me such a small dose of vitamin D. Thanks again

SeasideSusie profile image
SeasideSusieRemembering in reply to LucieC

If you Google for the guidelines for treating Vit D deficiency in your area you can see what your GP should be doing. The guidelines are a bit different for different areas. They all seem to be PDFs which I can't link to on my tablet but here is the Google search page with links google.co.uk/search?q=vitam...

And here is the Clinical Knowledge Summary (not guidelines though) - cks.nice.org.uk/vitamin-d-d...

quote from them:

"For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU]) given either as weekly or daily split doses, followed by lifelong maintenance treatment of about 800 IU a day. Higher doses of up to 2000 IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders.

Several treatment regimens are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total).

For the treatment of vitamin D insufficiency, maintenance doses should be started without the use of loading doses."

You appear to have been given just the maintenance dose for Insufficiency instead of the loading doses to treat Deficiency.

Your GP could either be ignorant of the treatment, in which case finding your area's guidelines will be important in pointing this out to him, or he is simply saving the surgery's money with no regard to how severe your deficiency is and how it will be affecting you.

The more you read on here, the more you will realise that a lot of doctors just don't care, unfortunately.

Goodytwoshoes profile image
Goodytwoshoes in reply to SeasideSusie

Thank you SeasideSusie - I googled Vitamin D deficiency for my health authority after being diagnosed with Vitamin D insufficiency of 27 and being prescribed the same as the poster - but by a gastroenterologist specialising in nutrition! I'm gobsmacked as it says <30nmol/l is 20,000 IU 's 3 times a week for 8-12 weeks. So why does HE not know what his own health authority recommends? I even asked the pharmisist before fulfilling the prescription - and she just said 'that's what is usually prescribed'. You might as well bang your head against a brick wall then................

SeasideSusie profile image
SeasideSusieRemembering in reply to Goodytwoshoes

Goodytwoshoes Yours is a typical example of why so many of us no longer have any faith in our doctors :(

We have to do our own research and find out what should be done.

Have you started to buy your own now and are you taking a decent dose? And D3's co-factors?

I was recently started on a maintenance antibiotic for my lung disease. Through the lung forum on HU I discovered that this antibiotic can cause liver problems and if you have long QT syndrome (a heart condition) it should not be taken. I also found out that liver function testing and am ECG must be carried out before starting the antibiotic.

So, did my consultant tell me this, or my GP who gave me the prescription? No, neither of them did. I discovered it after I started taking the AB. I mentioned to my GP that I'd found out that I should have been tested for both, and he filled in a test requisition slip and told me to book them. Fortunately both were fine, and I now have permission to continue with liver function tests every 3 months.

Som yet another reason why I don't trust any of them, always find out as much as I can, then question!

Goodytwoshoes profile image
Goodytwoshoes in reply to SeasideSusie

I bought 5000iu's D3 +k2 from Amazon before I got the prescription, but after reading all about not taking this with that and leaving 4 hours here and there - I have struggled to come up with a treatment plan. The supplements put me on about 60 tablets a day......and I'm lost with it all

SeasideSusie profile image
SeasideSusieRemembering in reply to Goodytwoshoes

Goodytwoshoes Check your private messages :)

SlowDragon profile image
SlowDragonAdministrator

Hi

As SeasideSusie sas, you have Hashimoto's. Medics don't really address this aspect, but very many of us find changing to strict gluten free diet can really help reduce symptoms, and may lower antibodies slowly over time too.

Selenium supplements can help improve conversion of T4 to T3 and may also lower antibodies

You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, low stomach acid, leaky gut and gluten connection to autoimmune Hashimoto's

thyroidpharmacist.com

Excellent web based document-series - re-running, starting March 1st

Masses of advice for all thyroid issues, but especially for Hashimoto's or Graves

thethyroidsecret.com/trailer/

chriskresser.com/the-gluten...

hypothyroidmom.com/92-of-ha...

amymyersmd.com

drknews.com

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