My aches and thyroid

[Bellmitzi]

Hi everyone I've been feeling really terrible last couple weeks really weak aching feel as if I've been psysically batterd on levothyroxine 100 mg daily also get b12 injections my throat and neck area hurt also had bloods done last weak I'm dreading the results in case they say all fine as I'm really struggling psysically thanks

[Lulu_65]

Hi Bellmitzi

I was very unwell for a long time with aches all over and generally feeling as weak as a kitten. I also had as you've described an aching and swollen neck. It was at the front in the area of my thyroid and I'd have to pull down on my upper chest to take away the pressure. After joining in with this forum I decided to go gluten free 4 weeks today) within the first two weeks that swelling and pressure on throat and neck had gone. My neck visibly looks normal now whereas before it looked visibly swollen

Lu x

[Bellmitzi in reply to Lulu_65]

Thanks for your reply as I feel although I look quite healthy I'm feeling dreadful I may look in to the gluten free now as I will try anything I'm so weak thanks lu

[puncturedbicycle]

Sorry to hear you're unwell. Do you know if you're usually optimally medicated? T4 and t3 high in range, good tsh, good vits and mins (ferritin, folate, d etc)?

I know you have another set of new test results coming but have you posted your last set of results? it might shed some light.

[Bellmitzi in reply to puncturedbicycle]

No I haven't sorry but I will be asking for them this time as I went up from 50 to 100 about 6/8 months ago it's the weakness that is really getting to me I really can't do silly things if it means standing for over few mins my eyes don't look right I think their looking glassy too I haven't got that cold feeling though that I've always had sort of I'm dead cold lol thanks puncturebicycle

[puncturedbicycle in reply to Bellmitzi]

Yes, the terrible nauseating cold was the first symptom that went for me. I was as grey as a corpse when diagnosed. I had an appt for a makeup session and the woman doing my face struggled to find a colour pale enough. Within a short time of taking meds I looked much more peachy.

I suspect if they doubled your dose you must have been very undermedicated, and you may still be feeling the ill effects of that. Did they retest you after the increase? If not you may yet need more meds, or perhaps you're a little over. Do you keep track of your temp and pulse rate? That can give you an idea of what's going on. And your gut function can tell you a lot too.

You also may benefit from adding a little t3. That is what sorted out a lot of my lingering symptoms. Not all alas, but having it is vital to me, I wouldn't want to live without it.

[Bellmitzi in reply to puncturedbicycle]

I have the last couple of days been checking my pulse it is between 93 /97 I have no idea what it should be what exactly is T3 sorry to sound daft but no one has explained anything about thyroid at all to me I only understand what everyone is saying on these forums do I need to get script from surgery for t3 thanks again

[Bellmitzi in reply to Bellmitzi]

They didn't retest me not until I complained how ill I felt again so awaiting results now

[puncturedbicycle in reply to Bellmitzi]

Ok I see. You may be a bit overmedicated. It was not especially responsible to double your meds without retesting.

[Bellmitzi in reply to puncturedbicycle]

No sorry they haven't re tested since the dr doubled my dose apart from last week I mis read yes I did have blood tests done b4 dosage was increased

[puncturedbicycle in reply to Bellmitzi]

No sorry, that is my fault, I didn't express it well.

It was good that they increased your meds *after* a test, but they then should have done *another* test in 6-8wks to see what the new dose was doing for you. So that's what I mean about it being irresponsible. To double your meds and not even check to see what that was doing to you is falling below minimum standards. There is no way to predict a reaction to thyroid meds, you can only keep raising the dose until the tests tell you the dose is correct. Everything else is guesswork. (Of course symptoms are also important, but there are treatment parameters the doctor needs to keep an eye on and for that reason the tests are important.)

The high heart rate + glassy eyes makes me think you're on too much levo. If you want to make a change I would suggest you try alternating 50/100 for a week and if your heart rate comes down in that time you'll know you're on the right track. I'm a layperson/fellow thyroid patient not a medical professional, but that's what I would do if my pulse was over 90.

[Bellmitzi in reply to puncturedbicycle]

Aww thanks very much I will try as I am desperate and I will ask for my results that will probably be an issue in my surgery but due to this forum I now know diff you've all been extremely helpfulBig Thanksx

[puncturedbicycle in reply to Bellmitzi]

Sorry, my fault. You'll figure everything out after reading here for a while.

Your thyroxine (aka t4) is a storage hormone, which your body converts into t3 so you can use it, maybe like burning wood to make heat or eating food and processing it into nutrients? Sorry, not sure what the analogy would be.

Some people don't convert very well, so you can add in some t3 directly which may help. Even if you convert well - which I did - for whatever reason you may find your symptoms aren't relieved by levo alone. You can get a script - the best option - or you can buy online if your doc won't prescribe.

Your pulse is quite high, though that needs to be taken in context w everything else. Is this at rest or just walking around? Is your gut overactive (ie are you on the loo all the time)?

Were you ever retested in the 6-8mos after they doubled your dose, not counting this last time?

[Bellmitzi in reply to puncturedbicycle]

No my pulse is at resting no strength to do anything strenuous no probs with gut at all just wish I had a magic wand like us all really as we can't do anything without good health thanks again

[Bellmitzi in reply to puncturedbicycle]

I'm not sure if you got my last reply I'm going to look online now for t3 everyone on here as been so helpful including yourself I will be asking for my results probably there will be a fuss but now I know I'm entitled thanks again will post as soon as I get and have all your help Thankyou so much

[greygoose]

If these are NHS tests, they probably won't have the FT3. Your TSH and FT4 could be perfect, but if you're not converting properly, then your FT3 will be low, and that will make you feel very bad. So, don't panic if the labs come back perfect, just get your FT3 done somehow, to get the full story.

[Bellmitzi in reply to greygoose]

Thanks for that greygoose I will I don't mind paying as long as I can feel a little normal if that's the right word lol so I need to get my results I do pay private health so maybe they can help me thanks for reply

[Treepie in reply to Bellmitzi]

Blue Horizon and Genova offer blood tests .

[Bellmitzi in reply to Treepie]

Thanks I'm goin ring tday to see if my results are back maybe too soon as I only had them done Fri morning thanks for taking the time to reply this forum is great as I have no idea on levels at all Thankyou

[Treepie in reply to Bellmitzi]

Make sure you get the ranges asvwell.

[shaws Administrator]

Hi, and I'm sorry you are feeling so bad. You've given no information on your profile of your thyroid history. i.e. when were you diagnosed and how long have you been taking 100mcg of levo.

Sometimes when first on levothyroxine we can get muscle/joint pain. I did and it's not pleasant at all especially as you feel quite unwell.

If you have thyroid antibodies it is said that people find some relief by going gluten-free.

When you have a blood test for thyroid hormones, it should be the earliest possible and fasting although you can drink water. Also leave approx 24 hours between your last dose of levo and the test and take afterwards. This allows the TSH to be at its highest (and doctors only take notice of it and may adjust unnecessarily). TSH is highest earlier a.m. and drops thoughout the day.

I assume you've also had Vit D, Vit B12, iron, ferritin and folate tested?

Always get a print-out of your results for your own records and post if you have a query.

When first diagnosed a blood test should be done every six to eight weeks with an increase in levo until you are symptom free, although doctors mistakenly believe that 'somewhere' in range is sufficient for the patient and disregard symptoms. We feel best with a TSH of around 1 or lower and some need it suppressed.

[Bellmitzi in reply to shaws]

Thankyou for taking time to reply I've been taking thyroxine for around 15 mths started on 50 then was upped to 100 levothyroxine I get a b12 injection I asked for D test in my last lot of bloods but was refused this time I saw a new gp and I'm awaiting results I will post as I have no idea on results and they do not explain it I think this forum is great as its not only me feeling dreadful thanks again.

[shaws Administrator in reply to Bellmitzi]

Members on this forum, do seem to be waifs/strays in the hypo world but many have improved their health a lot with support and advice. If you wish you can also become a member of Thyroiduk.org.uk who are at the forefront trying to change things to make it easier to be diagnosed/treated.

thyroiduk.org.uk/tuk/member...

[Bellmitzi in reply to shaws]

Yes I will become a member as only after one nite I've got some more info than I knew about thyroid and levels and I hadn't even heard about t3 thanks for reply

[shaws Administrator in reply to Bellmitzi]

By becoming members, Thyroiduk will have more clout the more members they have.

[Jaykanes]

Feels like you have been rolled down a mountain in a barrel

[Bellmitzi in reply to Jaykanes]

Yes that's exactly how I feel and really weak but because I look fine that's the problem I get thanks for reply

[Jaykanes in reply to Bellmitzi]

I work ten hours a day every morning my wife has to wake me up by putting my baby boy in bed because he's the only person I won't get angry with for waking me up I'm never refreshed from a sleep ever but he's a funny little bugger normally a finger up the nose or dribble in the ear

[Bellmitzi]

Aww that's cute but but not nice feeling so unwell all the time hard with a little one too

[Bellmitzi]

Hi I've got my results back tday still feeling unwell says no action needed but I'm not sure how to upload my results on here any help would be greatly appreciated thanks