Befuddled and frustrated: Hello once again with... - Thyroid UK

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Befuddled and frustrated

Joant24 profile image
8 Replies

Hello once again with my new set of results.

CRP 0.7 (0-5)

Ferritin 46 (13-150)

Folate. 5.1. (2.9-14.5)

Vit B12 169 (25-165)

VitD. 80 (50-200)

TSH 1.69 (0.27-4.2)

Free T3 4.3 (3.1-6.9)

Free Thyroxine 13 (12-22)

Thyroglobulin antibodies 16.2 (0-115)

Thyroid peroxide’s antibodies 154 (0-34)

I don’t understand a few things which in itself is not unusual these days! My thyroid results have improved slightly even though I feel quite poorly, my muscles are a mess and my tiredness is dreadful, I’ve had trouble with a tickle in my throat for a while and today I noticed that my usual neck wrinkles have disappeared and whilst I sing the praises of No7 moisturiser it’s not a miracle worker, I think my goitre might be enlarged!! All this plus the usual symptoms.

I don’t understand my raised B12 as I’m a vegetarian who eats fish just once a week and not on any B12 supplements.

I have started taking some Folate to raise that and upped my Vit D especially as winter is approaching. I also did a gluten intolerance test and it came back negative.

My plan for what it’s worth is to write to the GP (there’s one left who might be sympathetic) as it’s impossible to get a face to face appointment and I am ending up in tears when I start explaining everything on the phone plus there is no choice in who you talk to. I can also enclose all the relevant papers etc to help my cause.

Is there anyone who wrote a similar letter and got a good response, I could use some ideas please.

I know this may sound stupid but is there any way I can get my TSH to rise so someone will help, these symptoms are hitting me hard and fast but the results don’t seem to show this.

If the letter fails I’ll have to see someone privately as my life feels like it’s slipping away. I would very much like to enjoy being 65 and not feel like I’m 75!

Thanks for reading and sorry to whinge yet again.

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Joant24
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8 Replies
SlowDragon profile image
SlowDragonAdministrator

Recommend trying a daily vitamin B complex….the high B12 levels might be misleading

Folate needs improving anyway

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.

This can help keep all B vitamins in balance

Difference between folate and folic acid

chriskresser.com/folate-vs-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Thorne Basic B is a recommended option that contains folate, but is large capsule. You can tip powder out if can’t swallow capsule

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Ferritin is low. Not surprising as vegetarian

You need to get full iron panel test for anaemia

Look at increasing iron rich foods in diet

Strictly gluten free diet often helps or is essential. It’s always worth trying strictly gluten free diet for 3-6 months

If no noticeable change, reintroduce gluten see if symptoms get worse

Joant24 profile image
Joant24 in reply to SlowDragon

Recommend trying a daily vitamin B complex….the high B12 levels might be misleadingHow does this work then, won’t that just make it higher?

Thanks for replying, much appreciated.

SlowDragon profile image
SlowDragonAdministrator in reply to Joant24

Are you currently taking any multivitamins that might have B12 in ?

Or taken any B12 in last year

To use B vitamins we need then all present

Low levels of other B vitamins can be common with hypothyroidism

B vitamins are water soluble, so excess is excreted

If you’re vegetarian supplementing B12 is recommended

academic.oup.com/nutritionr...

The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3

Joant24 profile image
Joant24 in reply to SlowDragon

Haven’t taken any B12 for over a year which is why I was surprised.

JAmanda profile image
JAmanda

You’ve got plenty of room for an increase in Levo- your tsh is quite high and your T3 and t4 quite low in range - exactly the circumstances to ask for an increase if you still have troubling symptoms. Pile on the agony at the docs is my approach - I’m in danger of losing my job, my partner, I’m practically house bound etc! A decent doc should give you an increase oif 25mcg - if not, consider getting a new doc or self sourcing.

SlowDragon profile image
SlowDragonAdministrator in reply to JAmanda

Joant24 isn’t on any levothyroxine

Can’t get diagnosed

Hedgeree profile image
Hedgeree

Hi Joant24,

I know how hard it is to communicate with the gp when you don't feel well and also trying to explain to them and ending up in tears.

I began writing to mine as my symptoms were being dismissed alongside me feeling very unwell. This has resulted in getting other blood tests done and being referred but it was still a bit of a battle. Also I'm still not diagnosed but everything is moving in the right direction.

It is a good idea if you do write to the gp to also send a copy of the letter to the practice manager. Outline what your symptoms and issues are and what you would like them to do to help you. As you say include some relevant research information.

Also try and keep it brief and polite if possible, which I know can be difficult.

If you have a search on the forum, SeasideSusie always gives great advice for contacting your gp and what to include in a letter.

Good luck.

Joant24 profile image
Joant24 in reply to Hedgeree

Thanks, that’s really helpful and I hadn’t thought about a copy to the practice manager. I usually make more sense when I write it down as I tend to go off on a tangent quite often and then forget things. The GPs have a habit of cutting you off mid sentence too which is frustrating. Onwards and upwards I guess. X

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