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

[Polo22]

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.

[SlowDragon Administrator]

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 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 Administrator in reply to Polo22]

I would politely insist Levo dose is reinstated

Are you taking daily folate or a daily vitamin B complex

[Polo22 in reply to SlowDragon]

Yes , I had a brief period when taking less while waiting for penn ies to purchase more. Methyl folate and Pink Tribe B Complex, even managed to eat some red meat occasionally. I buy lean mince and do meatballs or burgers , can't do shop bought ones.

[Polo22 in reply to SlowDragon]

"I can't believe it" channeling Victor Meldrew , I have my 150 mcg back. Good discussion with a calm respectful Doc, listened to all my waffle and agreed or appeared to agree with a fair amount of it, just need to undo the damage Sneaky GP did now. I feel almost back to as bad as when I first found this wonderful site, but I know with the help and advice I can get back my well being and feel more like me. That's the difference this time HOPE, ❤️❤️❤️

[Sparklingsunshine]

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 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.

[Polo22 in reply to Judithdalston]

Just got some books Michael Mosley the 8 week blood sugar diet and the recipe book. Also found a woman Katrin/Sugar Free Londoner who seems to do some decent recipes so will be trying new stuff. Hopefully lose weight and feel like a human again. Have always had the problem that a lot of diets GP etc tell you to do contain lots of stuff I don't can't eat so just have to sort it myself.

[Polo22 in reply to Judithdalston]

Had signed a petition the other week about free patches for continuous monitoring and apparently there is going to be some announcement this week about it. I didn't realise that in some areas these were given to people but after only a month or so they were told to purchase their own and apparently about £100 or more a month, don't quote me on figures

[Judithdalston in reply to Polo22]

It would be about £100 a month to buy privately; they were originally given to type 1 and those on 3 diabetic meds ( eg 2 insulins and metformin like me) but are started being given to those with lesser diabetic problems or those who are proven can’t get HbA1c in control. I had not heard people were getting them for only a month…presumably in type 2 bracket that with a bit of help being shown for a month that some foods( not just cake etc) can send an individuals BG high…and should have learnt to moderate its intake etc. and perhaps go lower carb. I’d get yourself a free patch( has to be compatible with a mobile phone) and keep a diary of everything you eat , when, and how BG changes with food/ drink and exercise/ housework/ activity…if you have time even note the changes eating items on plate in different order, or having cider vinegar drink before hand make. Never mind illness…your BG will rise…a new hobby!

[Polo22 in reply to Sparklingsunshine]

Yes sick of hearing same old tripe about diet. They really need to up their game. The recent appalling Endo (Diabetes) referred for Thyroid, brattling on about my overeating, being obese, needing to be more active when you tell them your as active as you can be and you don't eat tons of processed food they look at you with contempt and say but you need to be eating a calorie deficit diet. Then won't admit or acknowledge that calorie deficit doesn't work for everyone as we need calories to maintain metabolism. Think the main problem for most people is highly processed foods, additives that were never meant as food stuffs. What annoys me that the very premise that all modern dietary advice is based on research carried out in Spain and Italy for a few weeks in the 1950's. They collected data on bp, cholesterol and diet, only problem was they based it on the diet they observed for a few weeks in Lent.

[greygoose in reply to Polo22]

The Israelis did some interesting research on diet a few years back, and they found that different people reacted differently to different food groups, so no one form of diet was 'healthy' for everybody. But that research seems to have sunk without a trace!

And what the whole medical profession either ignores or is ignorant about is the fact that hypos retain a lot of water, accounting for most of their weight gain. And no diet on this earth is going to rectify that!

Plus the fact that they still seem to be in denial about cholesterol being made in the liver and having nothing to do with diet - and certainly nothing to do with eating fat! I could go on and on about dietary facts that doctors know nothing about, but I'll just say: never, ever, take dietary advice from a doctor because they know zilch about it!

[Sparklingsunshine in reply to greygoose]

Its always seemed logical to me, how many time have we had a colleague or friend who has lost loads of weight on a particular diet yet if we tried it we didnt lose more than a few pounds.

My son's GF sticks to a low fat veggie diet that works well for her , I like intermittent fasting and yet there are those who prefer frequent, small meals.

I dont why the medical profession seem so resistant to the idea that one size doesnt fit all. We all have different genes, different hormone levels, metabolism, even gut bacteria. We all react to medications differently, so why not diets?

[greygoose in reply to Sparklingsunshine]

Because recognising that we're all different, and finding out in what ways, makes like more difficult for them. It's far easier to cram us all into the same mould and then blame us if we don't fit.

[Polo22 in reply to Sparklingsunshine]

I love herbs, spices seasoning , prawns, salmon, occasional less than 5% fat steak mince, like salads, do need a bit of dressing but often just mix some wholegrain mustard with a little honey and apple cider vinegar splash out sometimes and use a bit of sweet chilli dipping in it. Love roasted veg, peppers, shallots carrots butternut squash and sweet potato, do a huge amount then save some in fridge for picking at , oh oh just remembered a lovely one, peppers garlic, carrots, sweet potato cut into strips fry in a hot pan little bit of oil till they are starting to scorch then little bit oil then add some fajita seasoning pile it on a wrap with some feta , nom nom , making myself hungry

[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 in reply to arTistapple]

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

[Polo22 in reply to arTistapple]

Sorry head is disappearing up the terminal end of my alimentary tract,😂. I was on 150mcg , I had spent a long time gradually titrating T3 up to a viable dose. I have had some very skewed results in past high FT4 but TSH that suggests under replacement , up down all over the place. I had some BH results done FT4 was at top or just over top of range and FT3 was barely scraping into range. So eventually started T3. Because of T3 obs TSH was suppressed and Sneaky GP threw a fit, wanted to reduce,wouldn't listen. I said I would take 125mcg 2 days a week but she wasn't to mess with my repeat px and that we would test again in 8 weeks. My repeat was changed to 100 mcg daily and 150 mcg alternate days. She refuses to increase. I had gone up to 37.5 mcg , after a long period and was starting to feel the benefit but she was a pain. I had dropped back to 32.5 mcg earlier in year, then thinking of dropping again, but last FT3 was 5 on 3/6/24 so holding fire on that one. I had tried to just go back to 150mcg Levo but worried about running out. I need to source some more T3 soon ish too. I did try to explain to them few years ago when they wanted to start me on statins, anti-hypertensives , and diabetes meds that if they just treated my thyroid or lack of it there wouldn't be a need for all the faffing.

[arTistapple]

I think I need to read further back on your posts but I need to ‘switch off’ now. Will try to pick this up tomorrow again. Why oh why have we got such poor care? Just been watching the NHS debate stuff. Very disheartening.

[Polo22 in reply to arTistapple]

Yes sometimes we need to unplug, switch off and regain some perspective, not always easy but always needed, Thanks for the input as always 👍❤️