I've been Hypothyroid for 30 years, I take Levothyroxine 100μg during the night - to keep it separate from all the other meds I have for other conditions.
I follow the advice that certain foods are 'not helpful' for a hyperthyroid condition (Brussel sprouts, Cauliflower - which I have very occasionally, always cooked. I steer clear of soya based products).
I take vitamins and minerals for over 50's plus vit D, high dose as I don't get out of the house much (disability ).
My weight has constantly gone up and up, even though I'm very careful of my food intake, calories, protein, carbs and fats/dairy etc. I learned years ago not to go on a lower calorie diet as I put weight on and my body turns towards 'starvation mode' immediately (not releasing waste products).
I am now physically disabled with arthritic knees and cannot walk far, so any exercise I used to be able to do is now not available to me because of high degree pain.
I would appreciate any input from the community on what I can do to relieve each and every hypothyroid side effect - I've got them ALL, and always have had.
I tried, through a sympathetic doctor in my practice to get help or a consultation with the Endocrinologist for our area, but basically he answered my doctor with "it's Levothyroxine or nothing".
I'm happy to go outside the NHS for testing, if I can be advised as to the test I need.
My last blood test (6 months ago) put me within the 'range' at 0.5 TSH.
Help me Obi Wan Kenobi - you're my only hope...........😊
Thanks, Jackie
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Silverdaisy
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TSH isn’t a thyroid hormone. It a chemical signal TO your thyroid from the pituitary. The pituitary thinks your thyroid levels are in range. But the TSH is very unreliable you need actual thyroid hormones tested the FT4 & FT3. Is dr going by TSH alone?
I've been asking for years, in the old practice I was at - which didn't help at all, and my new (3 years) practice, who say TSH is all they test. I've had many conversations about it, which is why I'm now at a stage were I need to get this done myself.
Order a kit online and sample can be taken by fingerprick test, (extra fee for clinic visit / home visit venous draw) sample posted back & results available online often very quickly.
Sample recommended to be taken at 09.00 fast overnight, delay dose until after draw avoid biotin 3 days before test.
See link for private companies with discounts with many packages & options.
Defo order home test asap for full panel,TSH on its own is useless,T4 and T3 are what’s needed.Low T3 causes all the symptoms and it’s disgraceful you have suffered them so long.Once you get full results get them posted on here and you will receive great advice on your next steps.
“I follow the advice that certain foods are 'not helpful' for a hyperthyroid condition (Brussel sprouts, Cauliflower - which I have very occasionally, always cooked. I steer clear of soya based products).”
Typo, you mean hypOthyroid. I wouldn’t worry about eating sprout cauliflower ect. More than occasionally is fine. It’s of you ate just those food in huge quantities- all the time. Lots report improvement when Soya based products are avoided.
Gluten is often an issue with thyroid autoimmune which most hypothyroidism is due to. Testing can detect allergy (you need to be eating gluten prior to test). Intolerance will not show up, so even if negative trialling gluten free diet can be beneficial.
I follow the advice that certain foods are 'not helpful' for a hyperthyroid condition (Brussel sprouts, Cauliflower - which I have very occasionally, always cooked. I steer clear of soya based products).
So, what you're talking about here is goitrogens. But you are on thyroid hormone replacement, so your thyroid is no-longer working, so no matter how many goitrogenic vegetables and fruits you eat (and I bet you eat a lot without even realising they're goitrogenic) they will not have any effect on you.
Goitrogens act by impeding the uptake of iodine by the thyroid. But as your thyroid is no-longer working, it doesn't need iodine. So, forget the goitrogens and just eat the food you enjoy - cooked or uncooked, it doesn't matter.
Soy, of course, is a different matter because it isn't just a goitrogen. It also impedes the uptake of thyroid hormone by the cells. So, you can have good levels in your blood, but will still be hypo because it isn't getting into your cells.
My weight has constantly gone up and up, even though I'm very careful of my food intake, calories, protein, carbs and fats/dairy etc.
Hypo weight-gain has little to do with your diet. It is mainly due to low metabolism. But, also it's more likely to be water-retention than fat, which has nothing to do with your diet. And the fact that you're still putting on weight would suggest that you are under-medicated. As you know, just testing the TSH tells you nothing - the stupidity of these doctors makes me want to scream! So, if you could get a full thyroid panel done privately, I'm pretty sure it would show under-medication on only 100 mcg levo - with the possibility that you aren't even converting that T3 into enough T3.
I take vitamins and minerals for over 50's
Do you mean a multi-vit? We never recommend multi's on here for all sorts of reasons: not enough of anything to treat a deficiency, wrong form of the nutrient, iron blocking absorption of other nutrients, etc. But also because of the things it contains that you're unlikely to be in need of, such as calcium and iodine. And, even if it doesn't do you any harm - which it could - it is a waste of your hard-earned monty. The publicity blurb saying it's for over 50's is just that: blurb. Just a way of attracting your attention and buying! Don't be fooled.
On 100mcg levo I could barely function....not even on 200mcg.!
Medics had no idea what to do about this so I started researching and having private tests which eventually revealed the problem....it's all in my bio.
I'd bet a pound to a penny that your FT3 level is to low!
For good health almost every cell in the body needs to be flooded with T3 in a constant and adequate supply.
The storage hormone T4 must be converted to T3 to help make this happen but for some of us this conversion is impaired, resulting in low T3.
First you need a full thyroid test....see info from the others
TSH, FT4, FT3, vit D, vit B12 folate, ferritin and thyroid antibodies TPO and Tg
Depending on labs you very likely need to optimise the above nutrients with good quality supplements not multi vitamins
You will also need to raise your Levo dose to see if that improves things
If after that you still feel unwell you need to establish your T4 to T3 conversion status....
Low FT3 with high FT4 = poor conversion
If conversion is poor you may need to add a little T3
If T3 is low this slows metabolism which in turn prevents weight loss
Thyroid weight gain is not the same as that caused by over indulgence!
Medics insist TSH is the gold standard test which is absolute rubbish.
The TSH test was designed to identify a high free hormone level indicating hypothyroid but some clown tweaked it for use as a test to monitor dosing...
Result ...many struggling patients who were not diagnosed as under or wrongly medicated.
DippyDame, I appreciate everything you've said, (especially about the patience). I've ordered a comprehensive test and will post their results when received.
Do you always get same brand of levothyroxine at each prescription
Multivitamins never recommended
Stop these now and get FULL Thyroid and vitamin testing in week or so time
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
For full Thyroid evaluation you need TSH, FT4 and FT3 tested
Also both TPO and TG thyroid antibodies tested at least once
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
As you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Testing options and includes money off codes for private testing
I've ordered the comprehensive test from Medichecks. I understand what you advise about timings etc. I've never been told, even though I've asked, whether my hypothyroidism is Hashimotos or not.
Other meds: Sertraline, Amitriptyline, Ramipril, Amilodipine, Atorvastatin
OTC: Paracetamol and Ibuprofen
Hope this helps. I will definitely post my results when they arrive.
Other meds: Sertraline, Amitriptyline, Ramipril, Amilodipine, Atorvastatin
If you were adequately medicated for hypo, you probably wouldn't need any of those. Depression, high blood pressure and high cholesterol are all hypo symptoms. So, instead of treating your hypo correctly, your doctor is treating your symptoms as if they were all separate illnesses. That is very bad doctoring and probably making you worse, rather than better, because all drugs have side-effects.
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30 years on Thyroxin
Is this hypothyroidism?
Test results help for 92 year old hypothyroid
PET Scan 'lit up' two lobes of the thyroid which was excised 30 years ago. 
