Help, GP appointment tomorrow still can't get ... - Thyroid UK

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Help, GP appointment tomorrow still can't get them to listen.

Polo22 profile image
7 Replies

So the saga continues, Sneaky GP has refused to reinstate 150mcg daily since reducing it to 150mcg eod in November when TSH 0.01 , 0.27- 4.2, FT4 21.6 12-22, .my HbA1c went up to 54 Vit D 125 , Endo recently said this level was dangerously toxic thought the range BH anyway of 75-200 was optimal. Endo refused to look at more recent BH results

Feb TSH 0.01 0.27-4.2, FT4 17.2 12-22, GP bloods, my HbA1c at 54, < 41. BH T3 6.1

Bloods about 30/05/24 GP TSH 0.01 0.27 -4.27, FT4 13.3 12-22. no FT3, BH FT3 5.1 3.1-6.8. They also did B12 serum >2000, (197-771) serum folate 4.2 (3.9-26.8) HbA1c upto 66 <41.

Have managed to get my Lipids down to 4.4 , no real change to diet, just being aware of input, really not happy about HbA1c, of 66 so being dragged into GP and Nurse appointments tomorrow to probably be bullied into meds etc. Thing is most of the advice they give about diet, exercise etc I am already doing, not as much exercise as i would like but not complete couch potato. I can already see the faces and hear the eyes rolling , they think I am lying, and stuffing my face I am actually having a struggle to eat . I fear I could be arrested before the day is out tomorrow.

Help Oh wise ones. I can't think straight, I can pick out that TSH is not moving but since November when Sneaky GP reduced meds HbA1c has risen , Vit D is falling Folate is falling, FT4 is falling as is FT3, magnesium has dropped a little have had bloods done for Evil Endo last week but don't think I'll get access to them unless they are copied to GP but if they are I'll get copies.

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Polo22
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SlowDragon profile image
SlowDragonAdministrator

was this test done as recommended, early morning and last dose levothyroxine 24 hours before test

Which brand of levothyroxine are you taking

Always same brand?

Bloods about 30/05/24 GP

Free T4 (fT4) 13.3 pmol/L (12 - 22) 

Ft4 only 13.0% through range

no FT3

BH

FT3 5.1 3.1-6.8.

They also did B12 serum >2000, (197-771)

serum folate 4.2 (3.9-26.8)

What vitamin supplements are you taking

Folate far too low

No recent vitamin D or ferritin results?

Clearly you need levothyroxine dose increased

Polo22 profile image
Polo22 in reply to SlowDragon

Same brand , Accord, I won't leave pharmacy before checking, and give back if not Accord. Followed protocol from here.

BH results 3/6/24 Vit D 60, 50-200. folate 11.70 8.83-60.8, CRP 10.86 150 37.5 - 150.

I feel like a zombie, tired, emotional skin like sandpaper, on feet it's really bad, like scaley itchy psoriasis type, gets so dry that can catch on stuff and end up with chunks getting pulled off and feet bleeding. Hair getting quite thin dry, see my scalp , lots of blocking the shower drain. Very anxious and rageful, surprised my B12 isn't worse as starting to feel like dementia again, brain fog forgetting words. Was getting low on folate , so was taking EOD , but have got some more now. Was taking 2 vit D a day and K2, dropped it to 1 a day because of crackpot DR's , so I'll go back to my 2 a day, as always appreciate any help and advice. I just want to be able my case without out sounding crazy. Iknow they will be pushing for Diabetes meds, they won't believe me when I try to point out that since Levo reduction HbA1c has jumped up by 12 points despite me being conscious of my intake.

Plus I am now on Hydroxychloroquine, which can cause hypoglycemia, but can be fatal, yes small numbers , when combined with Metformin.

SlowDragon profile image
SlowDragonAdministrator in reply to Polo22

I would politely insist Levo dose is reinstated

Are you taking daily folate or a daily vitamin B complex

From what I remember of NHS advice on diet, especially for diabetics, its actually piss poor. Dont they still stick to the mantra of high carb low fat, ie the eat well plate. I'm not diabetic myself but I have family who are and high carb low fat seems the very worst sort of diet for diabetics.

In fact lots of carbs arent good for anyone except those who are extremely active and can burn them off. For lesser mortals fewer carbs, especially refined carbs is better. I think there seems to be consensus that the Mediterranean diet, rich in vegetables, fish and lean proteins is one of the healthiest.

Judithdalston profile image
Judithdalston in reply to Sparklingsunshine

As one that is both hypothyroid and diabetic ( originally, 24 years ago, type 2, then 10 years ago became type 3c due to sepsis/acute pancreatitis) my experience is that diabetes takes priority over thyroid problems, perhaps because Gp surgeries do have named diabetic nurses but no one concerned about rest of endocrine disorders…a sort of health Top Trumps. The better diabetic nurses do recognise low carbs are the way to go, but my 15 months on intermittent fasting gave the hospital ones a bit of a dilemma … after a few weeks they became happy/ informed! Unfortunately tho I had Hypothyroid problems concurrently to first blood glucose ones ( and other hormones too) it was over two years before thyroid ones were treated as TSH ( which was in high 5s/6s early on) reached 10 plus. So although I have the experience, cap saying ‘I have been there’ I hope you’ll get better, more timely, treatment, but I suspect they’ll try to treat the high BG…from what I know now I’d beat them at their own game and try going low carb. I good starting point to this type of diet, with recipes, is the Feedwell App run by enlightened GPs. You might even find wearing a free 2 week continuous blood glucose monitor ( eg Freestyle Libre 2, free from Abbott) useful to see what really makes your BG soar, like ‘healthy’ breakfast cereals..and modify your diet. Another useful source of diet nutrition/ reduction of BG info are easily found online are Zoe, Drs William Li, and Jason Fung.

arTistapple profile image
arTistapple

My HbA1c has dropped since it increased when taking short bursts of T3 and now returning to Levo only. I take pretty good care of my sugar intake/eat well. I think we might have had a similar conversation before about T2D.

My HbA1c as I say has dropped back to ‘normal’ but I now have damage to my eyes even although I was over for a very short space of time only. I don’t think this system really works for hypos, neither do the lipid checks. I suspect the results are actually out of step with the actual levels or at least ‘lag’. I now find myself very sensitive to sugar levels. I used to be sensitive but not for a long time. This has been disconcerting as it almost feels like a backward step. My lipids are falling but ‘they’ still want me to take statins. However I am taking the view that getting my ‘sensitivity’ back is a step in the right direction. I trust myself better than any test. If I had managed to get medics to listen to me eons ago, I would not be in this mess.

Anyway you say your meds have been reduced from 150 mcg to 150 mcgs?? Am I misreading this?

Professor Leilani B. Mercados gave a great lecture recently where she said that it’s all about metabolism. Many of the recognised Co-morbidities in hypothyroid patients are a sign of incorrect thyroid medication. T2D due to iffy metabolism and is a recognised co-morbidity.

Even your T4 is barely registering and you don’t take T3?

In her view it’s important to address the actual seat of the problem - incorrect thyroid hormone medication. IMO That’s the key and the sooner medics get to fully understanding than fiddling about on the sidelines, the sooner we will be getting better.

There may be a perfectly good reason your TSH is low. Get them to check that out ASAP.

Judithdalston profile image
Judithdalston in reply to arTistapple

Yes , wish 24 years ago they had treated my hypothyroidism instead of diabetes first!

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