Hi I have had an under active thyroid for years... - Thyroid UK

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Hi I have had an under active thyroid for years. I have most of the symptoms. I have sat in floods of tears telling my G.P. I am in pain.

Moon14 profile image
19 Replies

I have back pain, so much I can not even do my house work. The main pain is in my left wrist, just suddenly it starts to ache. I put it in a sling for support, this does help a bit. Many of you talk about a level or something...my doctor has never told me what level is good or bad. I stopped taking the medication after she refused to increase the dosage, as there was no improvement. I even felt worse. How can we be expected to blindly take the pills and not feel better? You expect the medication to start to ease the symptoms. I have had weight issues for years, but over the last few years it just goes up and down. My doctor said if I lost some weight then I would feel better. I started to cry and she just carried on typing. I asked her why my wrist ached so much but she just handed me the script and said to have another blood test. (Which I did straight away, but it was 'normal'!) I am a mature student and had to drop out earlier this year due to the thyroid problems. I asked my G.P. to help write to the university on my behalf because they have been hassling me for the fees. I can not afford the costs now. I described to her the pain and discomfort I was in and that one day I was trying to complete an essay by typing with just one hand, due to the pain in my wrist. She said she did not believe me and would not support my case with the university. I requested to have the medication increased and prescribed again; I have had two blood tests well over a week ago but still have not heard back. At this moment my back and shoulders are starting to hurt so I will have to stop. I am going on holiday to the south coast tomorrow, I just hope my legs and ankles don't ache too much. Sometimes I feel so lonely and sacred. What if I need surgery on my wrist? Or my back....? I am NOT lying and just looking for attention. Why can my G.P. not help me? I get so depressed some days; it was anniversary of my Mum's death back in February and all I could do for days on end was cry and I couldn't stop thinking about her. Even though she has been gone for nine years, it felt so new and fresh. My emotions are all over the place, so to speak. I cry for no particular reason sometimes. I am going to try a ne G.P. and hopefully get some proper help. Though I think I will request to see my notes, as I do not know what my G.P. has written about me. I have to stop now can not see the key board for tears.

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19 Replies
gabkad profile image
gabkad

"She said she did not believe me and would not support my case with the university." What a bitch. You need a supportive doctor and not a judgmental turd.

Low thyroid or T4 to T3 conversion issues can result in terrible depression. Good luck finding a human GP.. (I made sure everything else was top of range and optimal in order to get meds changed. They'll take any excuse to keep a person crawling on their belly like a semi road killed snake.)

I don't understand this: if a patient says they are in pain, THEY ARE IN PAIN. Period.

Hi moon, I am so sorry uou are feeling like this, I live eith pain too and I BELIEVE YOU are in pain .Please find another GP this one is heartless.I know very little about hypothyroidism (I am overactive) so sorry I cant give you any medical advice there but I do know about being in pain.I hope you find someone to help you and get on the right treatment to help you feel better, sending you a hug ..kim x

Meant to add after your much needed holiday try and learn as much as you can about underactive thyroid so that when you see your new GP so have the right knowledge to at least give you the best chance of getting the right treatment. Anything you dont understand ask on here and someone will explain it to you, I had to do the same and thete are some lovely knowledgeable members on here to help you.Good luck x

Marz profile image
Marz

I can tell you are really in a difficult place at the moment - but it will not last. Just a little thought to take with you - a positive note - please do not worry about wrist or back surgery. When we have pain it is mostly caused by muscles tightening and binding/restricitng joints and bones. We have many more muscles than bones - so try not to think of anything unpleasant and really enjoy your holiday.... :-)

On your return check out your minerals and vitamins - B12 - VitD - Ferritin - folate - VitD. All VERY important and may help you to feel better - it seems to work for so many of us on this forum....

beaumoa profile image
beaumoa

It is clear that you are currently feeling very vulnerable for all sorts of reasons and this is not helping you to fight your corner with under-skilled GPs who are not sufficiently specialised to understand the nuances of how the physical body and the brain interrelate and their interdependence.

As already suggested, do as much reading and research so that you have the knowledge to inform your GP. Never go unarmed. I mean by that, don't just talk to him about your conditions without any aide-memoire. Write down your notes in bullet point, making the relevant connections between your physical pain and your thyroid ( Iwrite mine in sperate boxes and then draw arrows from one box to another to make the connection). Write down your questions and provide your GP with a copy. On your own copy you can make further brief notes to guide you in your thinking. Highlight those areas of most concern with a flourescent highlighter. Try to keep calm and be at the helm in your conversation. If he/she tries to put you down, state calmly that your question has not been answeres. In aLL PROBABILTITY , he will reply he doesn't know and will refer you to a specialist.

With respect to not acknowledging your illness for a letter to inform your university, you must insist that this is done, as it is your body and not his - you know best. Your pain is probably linked to your thyroid, as mine is and tests will probably confirm all is well in the physical level.

Reasearch is just beginning to acknowledge that it is the brain organs, the hypothalamus, the pituitary gland and the amygdala, that are sending out these messages to our body because of an inbalance of hormones.

Interestingly for all other readers too, at last there is research evidence to verify the hypothalamus is linked to weight gain and the metabolic processes and most importantly, that its not just the ovaries that produce eostrogen, but so too does the hypothalamus! I told my endo-specialist these findings, but he had not yet heard about the research, so you can see the whole issue is an up-hill challenge between the patient educating the doctor and the doctor taking on board what the patient tells him.

Good luck and keep strong in the knowledge that you know best about your own body

chorkie profile image
chorkie

Dear Moon I just wanted to add my support to the other replies you have received here. Like they have said, I also feel you need to see another GP and ask to see an endocrinologist. GP's have a very basic understanding of Thyroid issues, learn at medical school that Thyroxine is the "gold standard" treatment for Hypothyroidisim, and obviously yours has very little patient empathy to boot. I have a T4 - T3 conversion problem. I was prescribed Thyroxine as I was Hypo but suffered for many years all the symptoms you currently. Like you the GP said my blood tests were "normal" because they only test for TSH and I was awash with T4 but did not convert it to the active T3 which every cell in your body needs to function normally. Learn as much as you can about Thyroid disease - knowledge is power and when your GP fobs you off or trys to patronise you she will soon back off when it becomes obvious that you know more about the problem than she does. Read Dr Barry Peatfield Durrants books. He is so knowledgable and understanding. You need help - make sure you get it from the right places!!!!! Good Luck!

shaws profile image
shawsAdministrator

Welcome to our forum Moon

You are now on the way to try to recover your health. It is amazing how many medical professionals have absolutely no understanding of the functions of the thyroid gland. It is the Master Gland which allows us to have normal health before it begins to fail us.

If you have been diagnosed with hypothyroidism, please begin to take your medication again as it can give you serious other conditions even if it makes you feel awful.

First get a new blood test and it must be the earliest in the morning and do not take medication until afterwards. You must not take any supplements or other medication until 4 hours after levo. If you haven't had a Full Thyroid Function Test ask your GP for one - she may not be agreeable but may do the basic. You can get others done privately but you may not be able to afford it.

Do not take medication if you take it in the morning of your blood test . If you take the dose at night - miss this and take after blood test next day.

Have the earliest appointment. Ask also for Vitamin B12, Vitamin D, iron, ferritin and folate as we are usually deficient and this can cause problems too.

What I think of your GP is not printable. She is another excuse for the 'caring profession'. Hard-hearted.

Make an appointment, tell her you are determined to get better, with or without her co-operation.

Inform her that Weight Gain is a clinical symptom of hypothyroidism and also a low dosage of levothyroxine.

I had more muscle and joint pain when I was prescribed levothyroxine and it is common. The problem is they don't know/are ignorant of any clinical symptoms of which there are many and we diagnosed according to a TSH result, even if we have had symptoms for ages. Are kept within the 'normal range' and whilst ignoring clinical symptoms. Are prescribed something other than a decent thyroid hormone that makes us well and function as normal people. We are also apt to get other more serious diseases if not medicated optimally.

Get a copy of your blood test results from the surgery with the ranges and we are entitled to them. They cannot refuse. Post them here for members' comments.

You are not alone - many do fine on levo but there are now around 18,000 on this site, so its not a low number of suffering hypo/hyper.

We know how unwell we can be, even maybe worse on medication, you think it's not worth taking it if it isn't working. Our emotions are up the creek but nowhere to turn. Now you do and it is up to you read and learn as much as possible and you, even today, know more than your GP does.

Best wishes

Silverpony profile image
Silverpony in reply to shaws

Dearest Shaws, thank you so much for all your efforts & kind attention.

shaws profile image
shawsAdministrator

If you cursor down this link re comments on weight gain. Dr Toft was the President of the British Thyroid Association and even they cannot put two and two together re weight gain even though they know it happens.

healthunlocked.com/thyroidu...

It is not a miracle but a slow journey to recover health and at times may be difficult but it certainly is possible.

silverfox7 profile image
silverfox7

Welcome to the forum and so sorry you have been so badly treated. I endorse everything shaws has said. Learn as much as you can to be better informed and ask on here if anything you don't understand. Many of us have been there and you are now amongst friends able to help you. It can be a slow journey as each dose increase takes time to stabilise and then be retested but hopefully you will soon see some improvement. The info on the Thyroid UK site is a good place to start gathering information. When you get any test results then post them on here with the ranges and we can advise you if they really are 'normal' and what to do next. Don't forget the ranges, they differ from lab to lab. I will be useful to keep a diary, I do wish I had, to record your doses, results and how you are feeling. But get back on the thyroxine ASAP and good luck.

Gillykins profile image
Gillykins

Dear Moon, I would just .like to add my sympathy to you. I did have a doctor like yours and I would shake at the thought of having to go to him. My husband wrote to him appealing to his better nature and he struck me off his books. My husband and I found another doctor if you can't find one the medical board appoint one for you. We never have had a problem since with any doctors we have had. So my advise is to find another but I think you should write your feelings to her. I also think she should have looked at your emotional state, we know stress can cause lots of physical problems too and you sound like you need some one with a bit of compassion. You are entitled to be put forward for "Talk talk" for some counseling their is a long waiting list of about 3months before you get to see someone but it will help if there are issues you haven't dealt with.

I did also write a post about a week ago on here about how much better I am on the brand Almus compared to Mercury. I would see if that would work for you and take them like I do in the middle of the night. I honestly was in so much pain and now I can't believe the difference.

My sincere best wishes to you. Don't loose heart. A big hug from me too. xx Gillykins.

marmaris profile image
marmaris in reply to Gillykins

Unfortunately they only do the mercury pharma for T3 in England, and compared to other T3's I find it weak. Good luck Moon14 I hope that you get the sincere help and guidance that you deserve. This is not an easy road to travel, but knowledge is power.....

Hi Moon. I know how you feel. I joined this forum recently in order to get advice on how to get diagnosed as my Dr was a bit clueless. Armed with the advice I saw a different gp who was more clued up who did an antibody test ( gps don't always do this ) which has shown a problem even though other tests are 'normal' - their interpretation of course, which might not be normal for you. Read up as much as you can including the brilliant advice on here. You will feel better just knowing your symptoms are prob due to thyroid and the anxiety that goes with that, and it is highly unlikely you need any surgery on your wrist or back. I lost my mum many years ago and still feel the way you describe. When you're not well it plays havoc with your emotions- and vice versa. Find another dr. and push for a wider range of blood tests as advised on here, and believe that you will feel better in time. Take care x

Ruby1 profile image
Ruby1

Just a thought, but are you sure that you don't have something like a ganglion in your wrist? Did the doctor examine your wrist. I was just thinking that if you were doing lots of typing (and possibly sitting awkwardly at a desk which could affect your back, neck and shoulders) then maybe it could be a repetitive strain type injury. Years ago I had a ganglion which was very painful. It eventually went down on it's own when I didn't have to do so much typing and sitting at a computer.

Best of luck on the road back to good health x

BeansMummy profile image
BeansMummy

Oh, I feel for you Moon14 :( Today is a bad day for me - physically not doing too well, and today I have had enough. However, although I am still fighting to improve, and it is a slow process, I know that I just have to get through this particular bad day. I hope that doesn't sound too trite.

This site has been a lifeline to me, and hopefully will be to you too. The advice people give has been invaluable. I hope today is a better day for you.

Angel_of_the_North profile image
Angel_of_the_North

I hope the bitch fall off her high heels on to her high-and-mighty backside, sprains her ankle and no one believes her.

When my mum was a university teacher, she was always very supportive of her students and would stand up to doctors, other departments etc on their behalf, so if you had a tutor you got on with it might be worth making an approach.

I'd try changing my GP.

CarolineC57 profile image
CarolineC57 in reply to Angel_of_the_North

Hi Moon - just wanted to add to what Angel says above. I'm a university tutor myself so I know about how unis work in this regard. Your college/university should have a service set up to help people with illness and disabilities. It's usually called something like "Equality Services" (might be "Disability Services" - but that sounds quite negative so most have renamed them). If you approach them, they should be able to help and advise you with regard to your studies. You don't need your GP's help to do this. Approach this service and they will believe you. They may be able to offer you some support/help for your studies.

Other than that, everyone else here has offered some great advice. I reckon too that you need to find a more clued-up and caring GP. Good luck! :-)

thegemprincess profile image
thegemprincess

I had terrible aches and pains that the thyroid alone did not resolve.

The best treatment I personally found came from an asian doc.

He told me to take washcloth and wet it. Put in microwave for 10 SEC

Heat helps the aches. That is why they recommend baths.

Also what nailed it for me was a good masseuse.

You deserve it.

Rather than pills just loving hands

Feel better soon!

sammorgar profile image
sammorgar

My mum is hypothyroid and on levo, pernicious anaemia (low B12). She has been complaining about the pain in her arms wrists and hands. The GP just shrugs. One of the carers suggested carpel tunnel. I could have kicked myself. I know from personal experience how painful that is I just didn't make the connection. Well on top of mum's arthritis she has severe carpel tunnel syndrome. She has had cortisone injections. If surgery is needed it's done under local. Sorry to hear about your mum I can't even imagine the pain you are going through, but remember it's only her physical presence that is missing. She will always be in you and with you all your days and she would hate to think of you suffering.

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