As a few of you know I went to see my endocrinologist yesterday. I don’t know what to think about the whole thing to be honest. I told him how tired I am constantly and how I am in constant pain with my joints and muscles.... I didn’t really get a chance to tell him any other symptoms as he was more interested in my vitamin D being low and at first tried to push the symptoms on that! Anyway he decided that I had been sent to the wrong department and that I should be tested for sleep apnea.... and that I should see a rheumatologist. He also said something about chronic fatigue and fibromyalgia and that if all else fails he would test My adrenals? Im kinda glad I’m being investigated for other things but because I’ve been like this for years I kinda got it into my head that it was all just a thyroid thing.
Saw my endo yesterday....: As a few of you know I... - Thyroid UK
Saw my endo yesterday....
We all seem to have experienced the same uphill struggle. Having an under active thyroid causes lots of varying problems. It took me three years from start to finish of getting T3 and despite being told I didn’t need t3 after three weeks I’m feeling a bit better!
I was told I had fibro and given vit d for life but found the vit d nhs prescribe isn’t very good so get my own with k2 and magnesium and turmeric in one tablet.
I was also told I had polycystic ovaries (which is also a symptom of under active thyroid) and given metformin (diabetic medication) which was hideous until finally was trialled on t3.
You have to be persistent, do your research and keep going. D3 vit May help with the fatigue, it helped me a bit.
Levothyroxine stopped me from having a good nights sleep but now I have 75mcg Levo and 20mcg liothyronine ans sleeping much better.
Keep going!!!!
Thanks katiboo78 I will look into T3 .... I asked about going gluten free as well to which he replied it’s in fashion at the moment and how someone was making money out of it and he couldn’t see it helping 😐
My endo told me to watch the carbs intake and yes I feel less slumpish with less carbs but that is not what is wrong with me 😂😂. It’s all a rouse to stop you getting t3 coz of the problem of the price of it but things are happening in parliament to bring it back! Why should we suffer coz someone let us get ripped off by it
If you don't buy gluten free packaged products and just cook good food from scratch I don't see how that adds up to big profits. You can even grow your own. We've just planted courgettes, sweetcorn and beans. Already got herbs in the garden and chives. Salad leaves next. Apple tree survived the winter.
The first endo I saw found my vitD was only 21. I took high supplements for 3 months. Felt miles better. Then i stopped taking them as level was about 80. During that summer my vitD levels dipped again. Was told in normal range, I insisted I should take regular vitD. Now take 1500 a day. If my level drops below 70 if feel terrible. It makes a huge difference in the intensity of my migraines too. Much more manageable. My “normal” is above 70. Gets on my nerves that we are all placed in a generic range. Why don’t you take some vitamin D and then get your level checked (plus calcium). I don’t take calcium, I don’t need it. If you feel a little bit better then that would be a good thing. Then go and find a different endo.
Hi lovecake, I’ve been taking a vitamin D supplement for awhile now but it’s still too low.... I have to admit I’m not great at taking it as sometimes I forget. The past few months though I’ve been keeping on top of it but the tiredness is still there.... I wasn’t expecting to much from him to be fair, but couldn’t believe he said I was in the wrong department.
Don’t give up. Keep taking the vitamin D. It is really important for your body. Maybe try going dairy, soy and gluten free. I use coconut milk in baking and making my gf pancakes for breakfast. Look up thyroid pharmacist on google. She has some good ideas and helpful suggestions to try. Also, if you drink tea or coffee, don’t have a cuppa within an hour of your levo. So many little things that might make a difference to you.
He knows little. CFS and Fibro were only named about ten years after the introduction of levothyroxine and the blood tests. I have read that Fibro is actually a deficiency of T3 and the person is Thyroid Hormone Resistant, which causes the pain/discomfort. Did he test, or offer you Free T4 and Free T3 test? If not you need these tested. Without them tested it is a guessing game.
Hi Shaws I had some more bloods taken there so will find out the results on Monday
Put them onto a new post with the ranges and comments will be made by members 
Tests should include all these TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies, vitamin D, folate, ferritin and B12
Tick of the following symptoms to show him. We must educate (it would seem those who are supposed to know best
thyroiduk.org.uk/tuk/about_...
Then give him a print-out of the following along together with the above:
Two links for you:-
web.archive.org/web/2010103...
web.archive.org/web/2010103...
Other topics are at the top of the page and Dr Lowe was an Adviser to TUK before his untimely death.
Some links within them may not work but you can get the gist and by the time you read both you will know more than most Endos
Snap ... years ago my private endocrinologist totally ignored blood tests showing Hashimoto's and poor T4 conversion on 150 levothyroxin dose, he suggested I got tested for sleep apnea ( negative) and put on metformin. 11 years later, still feeling rough with bad pain/exhaustion/weakness was diagnosed with fibromyalgia by rheumatologist. After spending winter 24/7 stuck on sofa hardly able to walk researched further and found DrLowe's archive on Thyroid Uk site- he believed fibromyalgia was the result of undermedicated hypothyroidism- so gone down his route, but DIY, upped Levothyroxin to above T4 range( and still T3 not going near halfway thru range), then started adding T3 slowly. Now on 25 mcg T3 and 75 levothyroxin: I can walk now, but still got a lot of fibromyalgia/ hypo symptoms, but these might take years to undo.
Hi judithdalston, your story is so similar. I’ve been suffering with my muscles and joints for years.... final straw was in April I couldn’t move, phoned my doctor who prescribed the usual naproxen, zapain and diazepam. I absolutely hate taking painkillers with a passion! Soon as I was able I went in to see him and that’s when he referred to endocrinologist. I’m already on 150mcg of levothyroxine.... im going to mention T3 when I see him again and if no joy think I’m going to have to diy like you.
It's quicker to DIY and also good for wellbeing feeling you can do something!
I don’t want to sound negative and I hope this Endocrinologist is good, but, My experience of an Endocrinologist was he concentrated on my vitamins levels.
To be fair they were not great, but, then said as I tested positive for Epstein Barr virus that’s why I felt like I did, muscle pain, neck stiffness, freezing cold, hair loss, dry skin, anxiety etc etc.
I also had antibodies present so I had Hashimoto’s.
He prescribed me anti depressants (I refused to take) I was depressed because I felt ill.
Anyway, he gave me some anti viral tablets I took them felt no better.
When I questioned why I didn’t feel any better after being on the tablets, he said it takes time and go on a long holiday.
Alarm bells started ringing and I thought this bloke has no idea.
This is when I turned to this site for help, as I had Hashimoto’s I went gluten and dairy free as per advice on here.
I started taking selenium 200mcg daily and I got my vitamin D, iron, Ferritin and B12 into a good range.
It’s important vitamin levels are good to support the thyroid.
I ended up suggesting to him that perhaps it would be a good idea to do a full thyroid test.
They came back only slightly out of range. He refused to put me on Levothyroxine.
I now understand why, that until your TSH hits 10 or over they will not prescribe Levothyroxine.
I had paid privately to see him so thought he would be more understanding.
We parted company and I got worse. Back to doctors, I was like a zombie by this time. Thyroid bloods taking TSH 12.2.
GP started me on 50mcg of Levothyroxine with blood tests every 6 weeks.
I’m currently on 100mcg with another blood test due in July and hopefully another increase.
Some GP’s /Endocrinologist will listen to patients symptoms not the NHS guidelines.
Make sure you obtain copies of your blood results (official lab ones) as although they may be within the NHS ranges, you can still feel awful.
Thyroid blood tests should be taken as early in the morning as possible. Ideally no later than 9am, no eating and only water before hand.
Why, it’s a tip we pass on here, no need to mention it to the GP. Your TSH is always higher in the morning, this is what you need to be able to start medication if needed.
Many patients end up self treating as their thyroid levels are not at the point where the NHS will help.
Others can’t get on with Levothyroxine. This is the Thyroid medication on the NHS. There is T3 available on the NHS, but it’s like gold dust, you have to fight to be prescribed it.
Levothyroxine only contains T4, you are suppose to be able to convert T4 to T3, which is what thyroid patients need.
Not everyone converts well, especially people with Hashimoto’s, hence why people can’t get on with Levothyroxine.
NDT, contains T3 & T4 but is not on the NHS. If you mention NDT to doctors they have a fit and tell you it’s dangerous blah blah blah, well they use to prescribe it until the synthetic Levothyroxine came out.
If it wasn’t for this forum, especially Greygoose and SeasideSusie I don’t know what I would of done.
Take as much advice as you can from this forum, especially the experience posters.
Don’t think because your seeing an Endocrinologist he will know what’s best for you.
Good luck & Best Wishes
Peanut31
Hi Peanut31, I went not expecting much and left thinking I was right.
You’re right this forum is great for information.
I’m just so fed up of being in pain and being exhausted. I just wish some of these doctors could experience what we go through on a day to day basis.
I need to get some control over what’s going on with me in some way. I can honestly understand why some people in pain commit suicide sometimes.
You need more than just vitamin D improving looking at this previous post
healthunlocked.com/thyroidu...
Have you had iron infusion to Improve terrible levels
Are you on a good quality daily vitamin B complex, one with folate in, not folic acid.
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
Vitamin D needs to be at very good levelswith autoimmune disease, usually aim for around 100nmol
As you have Hashimoto's are you on absolutely strictly gluten free diet?
Your endocrinologist is wrong, vast numbers of Hashimoto's patients find strictly gluten free diet helps or is essential. Many endocrinologists are now recommending it. Ask GP for coeliac blood test before starting
As you have Hashimoto's then sleep apnoea can be linked
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