My husband has to dress me in the mornings as my hands don’t work, hurt too much and no strength or grip which makes me tearful and useless.
I have to take thyroid meds in the morning on an empty stomach and wait until I can eat to take pain relief.
After a couple of hours I’m mobile. I can’t put pressure on my hand as my wrist won’t bend, can’t clench a fist or even lift the kettle .
I’ve been dealing with hypo for approx 10 years. After requesting a consult with an endo they suggested T3 but I have to buy it myself
All of this coupled with being self employed and children to look after and the inability to work as much as I’m extremely fatigued, brain fog, makes it hard to work as many hours as I need to plus, my energy levels are so low you feel like a useless parent!
I exercise far less than I used to as I’m less able to and also the detrimental effects after are terribly painful and I pay for it massively
I’ve requested bloods and oestrogen testing and waiting patiently for rheumatoid referral but I’m clueless regarding what info I should be armed with ie; should they be testing me for anything else?
Please help x
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Leslie_Walker
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Hello dear Leslie. From my experience, I have received tremendous help on this site from the experienced people here. They always ask to attach your test results. Please send all your tests with your letter, so they can answer you more accurately. As for me, I did a huge number of tests, drank a huge amount of nutritional supplements, but the main thing that helped me was intermittent fasting and the reduction of sugar and carbohydrates and meat. Our relationship withT3 is a huge, sore subject. Look in the archive, Please check the correspondence on this topic. All the best to you
I'm sorry you are symptomatic and also have pain . This is the method advised for us to get the best results:-
Always get the earliest appointment for blood draw and make appointment weeks ahead to ensure you get an early a.m. test. Don't take thyroid hormones before test but take afterwards. Thyroid hormones should be taken with one glass of water and wait an hour before you eat.
Food can interfere with the uptake of thyroid hormone).
Levothyroxine (T4) is an inactive hormone, supposed to convert to liothyronine (T3). The endocrinologist has no right to tell you to buy your own T3 - that's why we have the NHS and if we need a particular medication for us to relieve symptoms, it should be prescribed.
Do you take levothyroxine with one glass of water and wait an hour before you eat? It is recommended as food can interfere with the uptake of T3. T4 (levothyroxine) is an inactive hormone and is supposed to convert to T3 but sometimes we don't do so effectively.
Some members prefer a bedtime dose but miss this if getting blood drawn the next a.m. and take it afterwards and bedtime dose as usual.
If GP hasn't tested B12, Vit D, iron, ferritin and folate, ask for these at the next blood draw.
Always get a print-out of your results, with the ranges. Ranges are important as labs differ in their machines and ranges may be different.
It looks to me (and am not medically qualified) that you're underdosed.
If it suits you better, you can take thyroid hormones at bedtime. If having a blood test next a.m. miss this dose and take after test and bedtime dose as usual.
Excerpt:-
People with hypothyroidism often report having cold hands or feet, although they may feel that their whole body is cold. These symptoms are not exclusive to hypothyroidism, however. Circulation problems or anemia can also cause people to feel chilly.
Hypothyroidism symptoms: 12 signs to look out for - Medical ...
Hi, I’m so sorry you’re suffering like this. Good to hear you have a referral to investigate rheumatoid arthritis. Meanwhile I’d also ask to have iron levels checked and importantly ferritin - my joint pains improved dramatically after I was found to have low ferritin and treated with iron (n.b taking iron every second day is more effective than daily according to recent studies published in British Journal of Anaesthesia). Another possibility at your age is that you need HRT. Be careful going by bloods as (words of my gynae) they can be a waste of time as levels in peri-menopause women fluctuate a lot - I’d see if your symptoms add up. Look for Dr Louise Newson’s website or her Balance app. All the best.
I would definitely recommend you get key vitamins tested along with T3 and T4 levels. You need ferritin, folate, B12 and Vitamin D checking.I use Medichecks & tests are often discounted on Thursdays. This information is vital before you start supplementing. Post results on the forum once you have them & then members can better advise. Sending you very best wishes,
I agree with Buddy. Get a full thyroid panel done and check vits minerals, commonly low in Hypothyroidism. . Its not expensive if you look on Thyroid uk website they list sources. Hypothyroidism is called the great mimicker as it can present with very wide and varied symptoms. This is because thyroid horomones are very important to every cell in our bodies. If you dont have enough then it can cause very diverse symptoms. The puffiness you describe can also be a sign of under treated hypothyroidism, as is painful joints. It sounds like a specialist has already recommended you top up or move across to Liothyronine (T3) so clearly you are a poor converter. In your shoes whilst you wait for your rheumatology appointment I would get your thyoid levels optimally treated if that doesnt improve things then you can rule that one out!
Can you post up your most recent thyroid blood test results with the ranges (numbers in brackets).
Another thing worth trying is to get yourself tested for food intolerances.
Several years ago my hands in particular were getting very stiff. I was given exercises to do but they didn't really help, so I decided to get my self tested for food intolerances rather than getting onto medication. There were two main offenders and I gave them up. After about 2 months not only was my stiffness much improved, but also I realised that I hadn't had the indigestion and bloating that had plagued me all my life, so that was a bonus. Since then I find that if my hands get a bit uncomfortable I try to think what I've been eating by mistake that could have done this.
My main intolerances were wheat and oats, but yours may be different. However on this forum people are often advised to go gluten free which is helpful with hypothyroidism.
I hope you've found the ThyroidUK website which has a lot of useful information.
I’d see if you can’t hurry up your rheumatology appointment and in the meantime take lots of photos as evidence of what you mean. Might be worth keeping a diary of your day to day symptoms as well so that when you are seen you have lots of evidence.I went totally gluten free several years ago when I developed sero negative inflammatory arthritis. That was a couple of years after I went into remission with Graves’ disease. I joined CoeliacUK and got access to their amazing resources, it’s well worth worth doing that.
Going totally GF massively reduced my thyroid antibodies and also my CRP and I’ve been told I’m in remission for the IA as well so it could be worth giving that a try.
Have you thought of taking your levo at night so that you can just get up and take your painkillers? I think some people do that. That might help.
RAand rheumatic conditions are autoimmune disorders, your body's immune system is attacking itself.
I strongly propose a nutritional/ supplement regimen to dial down inflammation and readjust your bodies immune response. This will need a dedicated radical approach to eating and meals and you will need to get the whole family on board to help and support you on third journey but it can transform your health and whole life.
Supplements :
Omega 3 fish oils the highest potency you can find.
Selenium
Quercetin ( Nature's Health do highest dose)
Vitamin c , b12,
Zinc
The rest of the macro a d micro nutrients will come from food.
You will need to remove sugar, wheat, alcohol, tomatoes as these are all pro-inflammatory foods. Keffir ( 2table spoons a day) will be needed to re-establish a healthy gut micro biome which will be poor atm. The gut biome helps control inflammation and well being plus is its own pharmaceutical factory when healthy.
I would advise a diet that has a good track record for remission of arthritis The Whals Protocol. This doctor has done lots of research, produced a book ( Amazon) that doubles as a cook book and has put her own autoimmune Co diction into remission, MS, from being wheelchair bound and continuing to deteriorate on medical drugs, to working as the Head of a busy neurology clinic and en- joying a healthy busy life.
If you can take this and stick with it you have a very high chance of being fit and well again your old pre-ill self! All the best.
So sorry to hear how difficult life has become for you. You have my empathy. I too can’t use my hands, arms, can barely walk…. living alone and far from any family members makes it difficult. I am hypothyroid but I also have a few other autoimmune diseases: Rheumatoid arthritis , uveitis of left eye, Sjogren’s etc. Looking at the photo of your fingers it looks like you might have RA… so I would urge you in trying to speed up your appointment with a rheumatologist. Please insist on getting X-rays of your hands. Having to work and looking after children makes it most difficult. This forum has many wonderful people. Best wishes to you.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
You can take levothyroxine at bedtime
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
What vitamin supplements are you currently taking….if any
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If 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
Please add most recent thyroid and vitamin results
Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine
Do you know if you have autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least annually
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Low vitamin levels common as we get older too
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
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
Hi Leslie, I would definitely ask for a full iron panel as well. You are describing a lot of symptoms of hereditary haemochromatosis which is iron overload. The trigger for me is the fact you cannot make a fist and many with hh report this. There is a name for it but I cannot remember. Great advice here and I hope you get answers soon. X
I feel for you....I too had painfull swelling and stiffness but all over quite gradual to begin with but then a massive jump fluid wise weight gain from 8 stone to 10 stone in a month, back at the beginning of my problems with thyroid. Abnormal as I had been 8 stone for 30+ years.
I too found a huge difference when i took out gluten. its really really important that 'if ' you choose to get yourself tested for coeliac disease (moderately common with thyroid issues it seems) then you need to be eating gluten for at least 6 weeks prior to testing, and bare in mind that the NHS test is not 100%. But also note that 'gluten sensitivity ' is very common with thyroid issues .
There is quite alot of information out there about this, ie undigested proteins -leaky gut syndrome- thyroid issues- inflammation/fluid retention/stiff joints etc.
If you get to rule out coeliac disease, you can always try leaving out gluten (alot hidden in foods) you will know ,sense ,feel, within a couple of weeks if there is a significant difference. But you do have to be strict.
There are other foods that impede thyroid- gut function, but much better to tackle one at a time, to know what helps and what hinders. And seek nutritional advice so you dont go short on something.
For me, and its still working progress, getting the right balance T4 and even more important T3 gut wise/digestion/inflammation is crucial.
As everyone before has suggested, being armed with blood test already mentioned is your best way forward,you need the whole picture.
Keep positive, and post back here, people have been so kind and supportive to me on here over the years, and so knowledgeable, i dont know what i would have done without them.
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