I feel like I’m always fighting a flu with body aches and shooting pains. Like when you have a bad infection or flu and I’m trying to see how many others suffer from the same feelings. My TSH is 6.70.
Can anyone give me their opinion on what it fee... - Thyroid UK
Can anyone give me their opinion on what it feels like physically to have hypothyroidism
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JaclynB
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Yep sounds like typical symptoms, your TSH is much to high so won't be helping.
Buddy195Administrator
Yes this is a sign of hypo! I only felt the aching improved / pain subsided when both thyroid levels and key vitamins were better in range. Have you had your vitamins checked, especially vitamin D, Ferritin & Folate?
I’ve only had ferritin checked and it’s 75 and b12 is 251. Free t3 was 2.60
Without reference ranges it isn't possible to say whether your results are poor, adequate, or reasonably good. Do you have the ranges?
If the top of range for ferritin was 400 your level of 75 wouldn't be very good. If the top of range was 150 it would be almost optimal. Ranges make a big difference to interpretation of results.
When I had a TSH of 9 I was very depressed and suicidal. I actually burst into tears when my Endocrinologist suggested counseling instead of treating my Graves' disease. My body hurt all over and my hair was thin ... I felt like I was dying slowly and nobody cared.
How can someone with Graves ever have a TSH of 9? Were you on block and replace?
unlikely, you'd think, assuming they have a working thyroid - unless they are on a high dose of carbimazole without any levo.
I was on PTU he had not monitored me properly
How was the Graves' disease diagnosed Lora ? It would help us to help you if you could post the results of your thyroid tests, both from the time of diagnosis and your current results. Assuming you live in the UK, your GP surgery should provide you with a printout - just ask for a copy at reception. You need the basic results plus the reference ranges used for the tests. Ideally, you will have had TSH, FT3 and FT4 (thyroid levels) tested, plus a Graves' antibody test - TRAb or TSI.
TSH is a signal from the pituitary gland which tells the thyroid to manufacture more thyroid hormones. When thyroid levels are high (hyper), this signal won't be needed, so TSH will be low (1 or less); when thyroid levels are low (hypo), the pituitary will need to signals the thyroid to produce more hormones,so TSH will be high - a TSH of 9 definitely suggests thyroid levels are on the low side rather than the high.
With untreated Graves', thyroid antibodies take over the work of TSH and signal the thyroid to keep producing excess amounts of hormone - ie the thyroid becomes hyperactive. SInce hormone levels are high, the pituitary doesn't need to create TSH to tell the thyroid to produce more, so TSH levels are typically below 1, or even too low to measure properly. Even when Graves' disease is treated with antithyroids (eg carbimazole) to reduce thyroid levels, it often takes ages for TSH to reach whole numbers, never mind as high as 9. If you are taking carbimazole at the moment (or possibly an alternative, PTU), it sounds as if your dose is too high and should be reduced and/or supplemented with levothyroxine.
If you have Graves' disease and have had your thyroid removed, or have been treated with Radioactive Iodine (RAI), you would (almost certainly) become hypo, and without thyroid replacement (levothyroxine) your TSH might rise as high as 9. It's unlikely this would be anywhere near optimal for you (so no wonder you feel ill), but we really need to know what your current thyroid levels are to help you with questions you could ask your endo. If you have had your thyroid removed or received RAI, your endo should be expecting you to become hypo and need levothyroxine (and this should have been clearly explained to you before such radical treatment).
If you haven't had your thyroid removed or received RAI, and aren't taking antithyroid treatment, it would be surprising for you to have a TSH as high as 9 if you do indeed have Graves' Disease. The question then is, how was your Graves' Disease diagnosed ? Did you have thyroid antibody tests (TRAb or TSI), or even a thyroid scan ?
This was 12 years ago and I do have the results on my online records. I honestly think my GP at the time had no idea how to treat thyroid disease and wrongly assumed my symptoms were the menopause.
I tried to get a copy of my blood results and was charged £10 or could of waited for a month and they would be free 😡
They should not have charged you and you should be able to see you records and blood test result online and for free ... it is the law .... point that out to them and see what their response is.
did you at first think you were fighting an infection or flu that wouldn’t go away. Did it improve with raising your levo
I had no idea what it was and I did think I was suffering with cancer because of the weight loss ... it took about 2 years before the Doctors realised what it was and started treatment. In that time I had been given hormone patches and paid to see a dermatologist because of the hair loss. The Dermatologist who I paid £150 to see recommended Regaine! She didn't spot my TSH was 0.002 .... I felt like going back and asking for my money back but I didn't have the energy by then after suffering for ages.
I get body aches and pains all over, it's hard to get out of bed sometimes. Get your minerals checked, i.e magnesium and Manganese. magnesium is needed for optimal thyroid function and lack of is linked to joint, muscle and bone pain. Spinach, Brazil nuts and broccoli are full of magnesium
It was a long time ago for me, but I remember being permanently tired, sluggish and always cold. I kept putting on weight despite not eating much. I don't remember any pains.
I hope you're on thyroxine! If so you should soon feel better.
shawsAdministrator
The following is a link from Thyroiduk.org.uk who are an Organisation whose aim is to improve diangnosis and prescribing for people who are hypothyroid.
You can also become a member, which will give them a stronger voice when they have to talk to MPs or others to try to change the attitude of doctors and how we're diagnosed/treated.
The more members TUK have, the stronger we become and TUK are the ones who try to change medical minds. It is them who see MPs etc to try to change attitudes of the medical profession. Many don't seem to more than look at a TSH and if it is below 10 wont prescribe whilst in other countries if it 3+ we'd be diagnosed.
thyroiduk.org/tuk/about_the...
Unfortunately for us in the UK, GPs seem to have been given instructions not to prescribe until the TSH reaches 10. In other countries we'd be diagnosed when TSH goes above 3.
You can, if you wish, get a home blood test and it will be a Full Thyroid Function Test and I'll give details of private tests, just in case you wish to do so.
These are important suggestions:-
Blood draw should always be at the very earliest possible (TSH is highest then and drops throughout the day). You should allow a 24 hour gap between last dose and test. It should also be fasting (you can drink wate) and take it after the blood test. This will give you the best results.
Private test would include:-
TSH, T4, T3, Free T4, Free T3 and thyrid antibodies.
(If antibodies are present you'd have an Autoimmune Thyroid Disease - also called Hashimoto's)
You take levothyroxine with one glass of water and wait an hour before eating. Food can interfere with the uptake of hormones.
These are private labs who do home pin-prick finger tests and be well-hydrated a couple of days before drawing blood.
"GPs seem to have been given instructions not to prescribe until the TSH reaches 10. In other countries we'd be diagnosed when TSH goes above 3" - does this instruction also apply to those who've received RAI ?
I am not medically qualified Valarian so cannot answer your question. Before blood tests were introduced, we were all diagnosed upon clinical symptoms alone and given a trial of NDT (Natural Dessicated Thyroid Hormones) if we improved we stayed on it. It was adjusted according to symptoms.
This is an excerpt from the following link:-
"Over two-thirds of those who have radioactive iodine treatment will develop hypothyroidism (an underactive thyroid). This can occur anytime from one month after the treatment and is most common within the first 12 months after treatment but can occur later. You should have a blood test about four to six weeks after treatment, and should then be checked every one to three months in the first year - usually by your hospital clinic. It is very important not to miss these checks even if you feel well, as they can pick up an underactive thyroid before you have symptoms. After that you should see your GP for an annual blood test, or at any time beforehand, if symptoms of hypothyroidism develop. It is usually straightforward to treat an underactive thyroid gland. Levothyroxine, which is thyroxine in tablet form, is used to replace the thyroxine that your thyroid gland is unable to produce.
You may have got used to increased food intake without weight gain during the period of over-activity (increased metabolism). Once the thyroid function and metabolism is normalised, by any of the forms of treatment, you may have to reduce your food intake to avoid undesirable weight gain."
btf-thyroid.org/treatment-o...
I did not have my thyroid gland removed but did not improve on levothyroxine at all. I then tried several alternatives until I found what suited me, except the medical profession have now removed this (T3) and they also removed the very original thyroid hormone replacement which is called Natural Dessicated Thyroid Hormones (made from pigs' thyroid glands. This was given from 1892 onwards. Before that we died). This means that people who used either had to search to source their own.
I was diagnosed with FM ten years ago & ached everywhere, though I’d been cold for as long as I can remember.
Symptoms I've had at some point in the last 45+ years, not the whole time, some of which I manage well, some I don't. And if I'd had a properly functioning thyroid I believe the risk of the symptom or the severity of it would have been substantially reduced :
indigestion
heartburn
plantar fasciitis
brain fog
poor memory
lack of motivation
muscle weakness
lack of stamina
muscle and joint pain
period pains from hell
lots and lots and lots of gynae problems
headaches
muscle cramps and muscle spasms
benign fasciculations (look it up on youtube)
restless legs
almost constant low iron
spots, eczema, apthous ulcers all made worse by poor absorption of nutrients
anxiety
depression
weight gain despite usually having a small appetite
insomnia
nightmares (and later in life, loss of dreams altogether)
fatigued after waking
interrupted sleep
never feeling rested after waking up
being cold all the time
freezing cold hands and feet
night sweats
excessive sweating
low body temperature
gluten intolerance
enlarged tongue
puffy eyelids
dry mouth
poor balance
itchy ears
scaly elbows
skin tags
There are probably quite a few other symptoms I could add but I'm bored now, sorry. 
The above list didn't all start at once - quite a few of them have occurred as a result of getting older while also being hypothyroid.
Thank you so much for all your comments
Hi, yes before I was dignosed I felt like I was coming down with flu.
In my opinion it looks like you need an increase in your thyroxine dose. Also, check vitamin D, B12, ferritin and folate levels. Your TSH looks to be too high and your symptoms suggest hypothyroidism which needs treating.
Karen
Thank you for your comment. I’ve been to the doctor over and over thinking that I have some kind of bacterial infection or something because I get the same body aches like the times when I’ve had strep. But everything is always normal but high tsh is not. Every time I try to increase my levo I get really weak in my legs and arms and I get a low grade fever
Have you tried a different brand? What are your results showing? It might be temporary.
Karen
I take synthroid. It all started when I increased my synthroid back in January. I started getting low grade fevers rapid heart rate stinging pains all over pin prick sensations and diarrhea about 10 times a day. The lowest I was able to get my tsh was down to 2.41. I had to back off of the synthroid to get my fevers and diarreah and rapid heart rate to subside now my tsh is 6.70 and I’m so exhausted feeling. I’ve never changed my synthroid to a different brand. My bloodwork is always normal except tsh
I can see your ferritin is fairly low; have you had your D checked? It may be an absorption issue.
Karen
No I haven’t had my d checked in awhile but I know it always ran at the bottom of the range
So is your doctor addressing the low D?
Maybe if your doctor is flummoxed you could ask to see an endocrinologist?
Karen
Could you try a different brand? Some people do better on one rather than another.
Karen
I’m wonderful someone sticks to one brand for years that the body could somehow reject it. I’ve taken synthroid since 2011
Have you ever had different brands cause different symptoms?
I found when I tried Teva that I got hot sweats which disappeared when I reverted to Mercury Pharma.
I know whenever I increased the synthroid that was the first symptom I got. My hands were sweating like crazy.
Mine was more around my face and neck. Could you go to see an endocrinologist?
Last time I saw an Endo they wanted me to increase my synthroid but I tried to explain to them that it makes me feel horrible every time I increase. They didn’t believe me
Free t4 .90 (0.60-1.70). Free t3 2.6 (2.4-4.2). T3 total 89 (80-178). Tsh6.70 (0.35-4.0). T4 8.70 (5.0-12.0)
In my opinion your Free T4 and Free T3 are at the lower end of the ranges so you need an increase, especially as your TSH is out of range. Could you try a different brand to see if you get the same symptoms?
Karen
I heard that synthroid has acacia wood in it and I know that I’m really allergic to a lot of trees. I wonder if that could be causing my symptoms. Is there a brand that you recommend?
Yes, it could very well be that. Does your doctor recognise that? I don't know which brands don't have that in but I believe that Teva is lactose free. I do best on Eltroxin. Maybe have a word with your pharmacist about it.
Karen
Ok I will. Thanks so much for your input. No my doctor doesn’t know that. I just recently realized it myself
Well, maybe have a word with your doctor too and hope he listens and recognises the problem. I'm glad that you might have discovered what may be causing your symptoms. We often have to be our own advocates in these matters.
Karen
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