Julie Ann: Been diagnosed with under active... - Thyroid UK

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Julie Ann

Northdown23 profile image
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Been diagnosed with under active thyroid 6 months ago. Started off on 25mg of Levo now on 50mg as I was feeling so tired. Cant stop eating everything in sight ! Gaining weight now on a daily basis ! Not good.

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Northdown23 profile image
Northdown23
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14 Replies

Snap on the general situation, though I find not weighing myself or looking in the mirror helps a lot (!) Can you post any blood test results here for the guys to comment on?

I have been wondering about the hunger and weight gain and craving for sugar. I found a research piece (Indian) which points out that hypothyroidism and hypoglycaemia are closely connected but that modern medicine seems to have forgotten about this. Low blood sugar comes with the territory - so hunger surely would too.

Here's an extract (Googling the two hypos will lead you to the paper itself) : "As it is linked with suboptimal growth hormone response, the recovery from hypoglycemia may be prolonged in hypothyroidism.

Hypothyroid patients have relative adrenal insufficiency, even if they are not associated with primary adrenal failure. [/Another thing GPs don't know, it seems]. There is a blunted hypothalamo-pituitary-adrenal response to hypoglycemia in hypothyroid persons.[22] The reduced cortisol responses to insulin-induced hypoglycemia that are noted in hypothyroidism also worsen hypoglycemia.

The role of gluconeogenesis is reduced in hypothyroidism, both in skeletal muscle and in adipose tissue.[23] Glycogenolysis is also impaired in hypothyroidism.[24] These biochemical defects lead to a delayed recovery from hypoglycemia.

Other abnormalities in hypothyroidism include a reduction in glucagon secretion,[25] reduced effect of glucagon on hepatocytes,[26] and slowing of insulin clearance.[10] [Here comes the bit which I find easier to understand] Contributory factors also include the effect of hypothyroidism on the gastro intestinal system. It slows gastric emptying[27] and decreases intestinal absorption of glucose as well as portal venous flow.

Let's repeat that "Hypo... decreases intestinal absorption of glucose."

So it's reasonable to suppose we might crave carbs especially quick sugar fixes. And of course sugar overcomes the natural "stop eating" mechanism in the brain.

In order to fuel my brain to understand that tricky sentence in the middle I am going out to buy a very large Dairy Milk bar.

Northdown23 profile image
Northdown23 in reply to

thank you Aspmama for your prompt reply and full of information ! I don't have my results my GP just pointed to her screen and said your TSH is 10. 6 months ago I was borderline and on 25mg of levo. After feeling so tired and irritable I got more bloods done and was told my TSH was 10. Levo then increased to 50mg. She said once the higher dosage of levo kicks in I will loose weight ! I find that hard to believe ! She mentioned my white blood cells were low too. I really need to get my results and do some researching. Should I go and see an Endo ? Would that make more sense and get some answers from an expert ? Appreciate you taking the time to reply to me. I am with you on the Dairy Milk bar lol :-) :-)

in reply toNorthdown23

Well, the experienced commentators on this forum will be along any minute full of knowledge and anger on your behalf.

Till they do I will say the obvious - a TSH of over 10 is undoubted hypo even in conventional medicine. You should not be waiting six months between blood tests - six weeks is more like it until your TSH goes right down. Your clinical care I would say - and I am not a dr, obviously - is negligent. I would suggest that you write to your GP and say that your TSH was 10, you remain on a dose of 50 Levo six months later, your symptoms are worsening, please could she fill in a form for a blood test, including B12, ferritin, vitamin D and folate. Say you are not sure whether your autoantibodies have been checked, if they have not please could they now be tested because you would like to know if your hypothyroidism is autoimmune or not.

Ask if an FBC (full blood count) can be taken too, given your low white cell count on the last test.

Ask whether an appointment can be made with her a week later (so the lab results can come back) so that your dose of Levo can be reviewed.

Then ring the GP surgery or visit it and ask the receptionist for a full print out of your previous results and post them here. You have a right to these, and you can say that you are keen to keep a record of your results so that you can follow your progress.

I think you will find that she agrees to all you ask once you put your situation in writing.

Your low white cell count could just be because you had flu or some bug when last tested. But it may indicate something else and she should have given you a form for a second blood test a month or so later, I think.

I don't think you need an endo yet, I think you need proper treatment following NHS guidelines from your GP at this point - if your second blood take shows things are getting worse that situation could change.

But the real experts will comment soon.

Clutter profile image
Clutter in reply toNorthdown23

Northdown, Levothyroxine dose should be increased in 25mcg increments every 6-8 weeks until TSH is just above or below 1.0.

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

If your GP isn't on board with this you should see another GP in the practice.

Have just re-read your post and it looks as though you probably last saw her less than six months ago because you first were prescribed 25 and then were moved to 50 on a second visit. The letter above still works, but change the months interval to whatever is accurate.

Northdown23 profile image
Northdown23 in reply to

Thanks again Aspmama for all the info. I am due to go back again in 6 weeks time. Its the no energy and tiredness I am finding hard to cope with. The constant need to eat everything in sight too. My white blood cells have been low for around 10 months now too. One of the other GP's in the surgery said it was a sign of leukaemia ! However after going to see a haematologist and convincing myself I was dying - there was nothing wrong with me ! Anyway I think I need to get the full results in order to get a clearer picture of my overall health. So glad I found this site ! Thanks again for the info xx

What Aspmama said, plus drinking fizzy water and taking green tea, cinnamon and fenugreek (nice as a tea on with rice) may help blood sugar balance. Eating fat with a carb meal also seems to help. Coconut oil is good.

If your white cell count is consistently low there is something up, it seems to me, and I am pleased you don't have leukaemia (a high white cell count can show leukaemia too) but I think you should not be satisfied until they work out why your white cell count is low.

Ring up and ask to be seen as soon as possible because you are feeling terrible, you shouldn't have to wait for another six weeks.

We all start off in our encounters with doctors thinking they know best and have the answers. Sadly we discover, especially in hypothyroidism (and in birth practices in my experience) that they don't, and we have to be pushy and fight a bit, which is terribly draining when we all feel so tired.

Northdown23 profile image
Northdown23 in reply to

Thanks Aspmama for taking the time to reply. The white cell count being low is concerning but my GP doesn't seem to be too worried. As you say I think I need to be a bit more pushy just to get answers ! Great support on here and great advice too. Will get the full results and post on here next week. Thanks again :-) x

MMG207 profile image
MMG207

My doctor refuses to give me any levels at all and I have been on LT4 50 for 3 years. He checks my blood once a year and always says it's within the normal range. In the meantime I was getting sicker and sicker. My "normal" weight, all my life, was never above 120lbs and now I am 205 and climbing and sick, sick, sick and since he refuses to do anything more about my "normal" thyroid I have taken matters into my own hands. On NDTH I am seeing a reduction in my symptoms. It's a sad state of affairs to have to self medicate, but that seems to be the only way. Still playing with the dosage, trying to get it right. It's very depressing.

Clutter profile image
Clutter in reply toMMG207

MMG207, the Data Protection Act entitles patients to their test results. Ask your GP receptionist or practice manager for your results and ranges. If they refuse make a written subject access request for the information.

ico.org.uk/for_the_public/t...

_____________________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

MMG207 profile image
MMG207 in reply toClutter

Thank you. I'll try, but I'll only get results once a year even then. Looking for another doctor presently. I feel I can't tell them about self medicating on NDT though because they all believe that only the synthetic drugs work.

Clutter profile image
Clutter in reply toMMG207

MMG207, the Data Protection Act entitlement I referred to applies in UK but probably not in Canada.

Attitudes are the same in the UK. NDT isn't licensed for use here so it's difficult to get it prescribed. I tend to the view that there's no point in sharing that you're self-medicating until you know whether or not it is working for you.

_________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

MMG207 profile image
MMG207

I agree, but even then, with my doctor's attitude, I hesitate to share anything of this nature with him. He treats me as if I don't have a brain and even if I ask if my levels are okay, he says things like, "I'll tell you if they're not okay. Don't concern yourself with it. I'm the doctor." It took me two years to get a thyroid test, and only got it when he had a replacement doctor because he was away. The results showed I was hypo, but the office didn't phone and tell me. I only found out six months later when I went in for another problem. He gave me 50mg Eltroxin and didn't test me for over a year. I have to find a better doctor but it took me years to find this one after I lost my former one by moving away for a few years. I'm going to look into the adrenal fatigue also, because when I started the Nutri-Meds I got serious heart palps but they went away after about three weeks. I don't like being my own doctor, but at the moment I can't see any other route. Thanks for your concern. This is the first time I've vented, and I won't do it again. I've just been soooooo frustrated and sooooo sick.

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