Advice? Rubbish GP etc: Hello, I was only on here... - Thyroid UK

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Advice? Rubbish GP etc

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Hello, I was only on here recently so apologies for that...

I've got Hashis and started Levo (50mcg) maybe 10 weeks ago. I had my TSH and T4 tested recently and my TSH has improved (now 1.8). My T4 is still not great (14.8; don't know what range is though) but GP described it as 'saggy'. He's happy to leave me on this dose and to retest in 6 months.

I'm aware that this should be done in 6 weeks, that 50 mcg is a low dose etc. He isn't very sympathetic at all and was downright p*ssed off when I got a Medicheck test done. My ferritin levels were through the floor ('Lots of women get by with low iron'), folate and D3 very low too. I'm working on all this myself with diet and the right supplements but am having symptoms: mainly headaches which can last for days, palpitations, freezing cold extremities, awful brain fog and feeling detached, forgetfulness, lots of GI issues - for which I take Ranitudine but it's not very effective - and other autoimmune conditions, crap circulation, heavy periods. I know some of these can be attributed to my woeful iron levels but I think maybe my Levo could take an increase?

I'm planning another Medicheck test soon. I know my doctor won't budge on retesting before 6 months so I may go down the route of sourcing my own extra Levo (providing it isn't Teva).

Would this be advisable? Obviously I'd post the results on here and request advice on my next move...

Sorry for being a pest. I'm pretty clueless.

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11 Replies
SlowDragon profile image
SlowDragonAdministrator

Making sure your vitamin D, folate, ferritin and B12 are optimal can help Thyroid hormones work better

How low was vitamin D?

How much are you supplementing?

Are you also taking magnesium supplements?

Eating liver or liver pate once a week should help improve your ferritin. Plus a daily good quality vitamin C may help improve iron absorption

What was B12 level?

Are you supplementing a good quality vitamin B complex, or just folic acid?

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be more beneficial than just folic acid

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).

Or Jarrow B-right is popular choice, but is large capsule

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

Recommended to get thyroid retested once vitamin levels have had time to improve

Email Dionne at Thyroid Uk for list of recommended thyroid specialists, you may need to go over GP's head to get dose increase in Levothyroxine

please email Dionne at

tukadmin@thyroiduk.org

in reply toSlowDragon

HI, I'm taking methylated vitamin B and methylfolate daily, magnesium citrate 400mg, 1000mg vitamin C (Solgar Ester-C), zinc citrate 30mg, Solgar gentle iron 20mg.

My vitamin D levels (January results) were 54.7 (50-175), B12 83.2 (37.5-188) and folate 4.4 (3.89-19.45). Ferritin was 16.7 (13-150).

I've upped my supplements and have been eating black pudding (gluten free) and liver pate. I'll get tested again within the next month.

Unfortunately I live in the Hebrides, and emailed Dionne re. endos, but because we're so remote (Glasgow/Edinburgh 6 hours away) there isn't anyone. Inverness is 3 hours away and that's where the hospital is, but none are listed there. My GP is treating me like a total hypochondriac so I daren't make an appointment.

SlowDragon profile image
SlowDragonAdministrator in reply to

OK

Well your vitamins were all very poor

Improving these may result in increase in TSH and dropmin FT4 and FT3....then you can take results to GP for dose increase

If he doesn't like that you did private testing, he can repeat them on NHS

Vitamin D at least around 80nmol and around 100nmol may be better

Ferritin was dire. Did you get ferrous fumerate prescribed? Eating liver or liver pate also good for helping increase levels. Daily vitamin C may help improve iron absorption

B12 and folate on the low side. Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).

Or Jarrow B-right is popular choice, but is large capsule

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

Selenium supplements can help improve conversion of FT4 to FT3

Magnesium can help vitamin D

Hashihouseman profile image
Hashihouseman

Ok I’m going to give a slightly different view, we are all different and so trial and error and looking for clues to what suits us is par for the course...

That TSH level isn’t so bad, the healthy norm is between 1 & 2, maybe nearer to one but it isn’t much less than 1 and just because you are on levothyroxine doesn’t mean that should be different, especially if your free t3 is ok and if you feel ok. You need to balance all three TSH fT3 & fT4, so testing all are necessary, every time you change medications and a few weeks after or when you feel weird and want some insight! In my experience levothyroxine takes a hell of a lot of getting used to, I split my doses and take a simple anti-histamine which seems to ameliorate many of the adverse effects of taking what are quite possibly unphysiological levels of t4 all in one dose. Normal healthy fT4 is nearer 15 NOT the top of the lab ref range! Many hypothyroid patients can tolerate and need higher t4 levels to increase t4-t3 conversion because the thyroid gland can’t produce the small but vital amounts of t3 it did to go with whatever t4 levels were wired into your system... this is why people either add small (or sometimes unphysiologically large) amounts of liothyronine (or desiccated thyroid) if they can get it or rely on supra-physiological t4 dosing fT4 levels, I for one can not tolerate that! Good luck in finding YOUR path :)

Thank you!

bit stuck to be honest - if I self-treat on the quiet, obviously my bloods will reflect that in six months' time. I followed the TUK protocol re. what to do prior to testing so am aware of all that. I just don't know what to do about waiting another six months.

The past few weeks I've been getting tingly fingers after a bath which is new (have always suffered cold extremities) but this morning I woke up with tingly feet and it isn't going away. No idea if that's linked or not but it's worrying me slightly.

Hi, unfortunately anything I suggest rubs him up the wrong way. He's very dismissive. Presenting him with information doesn't work, I've tried in the past. This is why I've ended up going private in the past but living here, all private consultants are 6 hours away. My hands are tied and it's incredibly frustrating. I'll possibly resort to self treating if I possibly can.

in reply to

That's exactly what I do and have not visited the GP or Endo for the past two years. Their so called treatment with Levo in various doses only made me very ill. I then joined this site and now self medicate and do a private blood test. I post the results on here for answers. I use thyroid s NDT at present and it works well. I have no thyroid either.

Do I need NDT if I've only recently started on Levo? Sorry to be ignorant.

I'll get some advice once my next set of Medicheck results are in. Thanks!

kferrer profile image
kferrer

In all the years since I was diagnosed, I spent eleven self medicating and the rest being treated by a medical professional. Looking back on it, I was at my very healthiest when I was self medicating. I'm far too naturally law abiding to feel really comfortable with that but I may go back to it anyway because I just don't think it's right to keep on letting the medical profession ruin my health any longer.

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