This is the second time I've posted now, but I've had a really rough few months and it's come to a head.
I've recently had my thyroxine higherd from 75mg to 100mg after persisting for a month to my GP I need another blood test.
I've seen 4 different doctors and they all have different opinions on what medication I should be taking but not one of them can help me with my symptoms.
I've had an underactive thyroid for nearly 4 years now and my life has been hell. I know there are far worse off in the world who suffer, but my life has changed so much I cannot function anymore.
I have pains in my legs that just do not dissappear, I've questioned whether it is my combined pill, had a doppler scan and ct scan (previously spitting up blood but no sign of clots). Most days I can't pick them up they feel like lumps of lead.
I have pains in my chest from day to day and they put it down to stress and costochondritis, bearing in mind the only thing that stresses me out it constantly feeling ill and exhausted. I have a brilliant support network from my family and friends and luckily a great job.
I've been on iron tablets 3 x a day for 2 weeks as my GP says it's borderline but may need treating. My B12 is normal, apparently, but my cholesterol is 'sky high'. Everytime I ask for a print out of my results I never get them! I take 1,000 units of vitamin D and I've always suffered with acid reflux since I was 13 (endoscopy confirmed this). I'm on the combined pill because I have very irregular periods, every 2 weeks, due to scarring from appendix operation over my right ovary.
I am 26 years old and feel like I am an old frail lady. I don't have a social life as I am always too ill to do anything. All I seem to do is cry and feel sorry for myself and end up panicking and having anxiety attacks because I feel so ill.
Please, anyone who is suffering the same, am I going insane or are these legs and chest pains due to the underactive thyroid?
Apologies for the long post
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Rachel1989
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I have chest pain and leg (what feels like cramp) pain. The chest pain starts with something that feels like indigestion then a bruising ache around my heart and if I don't rest a shooting to my left shoulder . its not the same feeling as when I used to get when I had anxiety, its difficult to express in words but its not the same feeling. If this sounds like your symptoms, we are in the same boat.
They sound like my symptoms, my shin and foot hurt, also chest pain that got quite bad I was sent for ECG thankfully that was fine, I never realised was part of thyroid probs.. Wow
Rachel, the Data Protection Act entitles patients to see their test results. If verbal requests have been ignored make a written subject access request for your test results and ranges. Results within 40 days of testing should be free of charge although the practice is entitled to charge a nominal £1/£2 to cover the costs of printer ink and paper.
Scroll down to read the signs and symptoms of B12 Deficiency - you can see that many of your symptoms are mentioned. Sadly Docs have little understanding and declare you normal when just inside the range. This is unacceptable and you should have B12 result near the TOP of the range.....
Never accept Normal as a result - it is an opinion - not a result Where you are in any range is so very important if we are to feel well.
How are you treating the acid reflux ? This is often caused by LOW acid - we need good levels of acid to break down proteins into smaller molecules for the onward journey from the stomach into the duodenum.
Raised cholesterol is just another symptom - in many cases - of low thyroid.
What other medication are you taking in addition to your Levo ? VitD of 1000IU's could be raised - do you know your last result ?
Hi I have hypo for the last 5yrs and this year have noticed a considerable change in my health, my tablets were raised to a 100 and I truely thought great I will feel better, but no... I have really bad foot pain and a swelling of the ankle, painfull shin but my gp has put it down to a small op I had done last yr on my knee so waiting to see a consultant. I have chest pain had ECG but all fine, I have felt really low and very paranoid. I will be taking a trip back to gp after reading all the information I have read on here, it has been very helpfull. Oh how I wish I could wave a magic wand and go back to feeling normal that seems such a long time ago.
Has the chest pain started since on Thyroxine? It can cause it. You may need a small dose of beta blockers if so .
Hello Rachel,
I feel for you as I too have had a rocky path with strange symptoms that doctors have been unable to identify.
I think most of yours will be down to ill managed hypothyroidism as you probably require a dose increase. The remaining could be a very deep biochemical imbalances that will never recover until the thyroid issues are addressed first.
I was diagnosed five years ago but believe I remained undiagnosed for many many years leading to a lot of deep rooted problems.
It is VITAL you get your test results for members to comment as a doctors "normal" is not always how a person functions at their best. If there is a problem, the longer it is left, the worse it will become. Clutter has given advice above or else get private testing from link below
Although predominantly about Hashimotos, this link clearly explains how hypothyroidism and thyroxine (Levothyroxine) effects a woman's cycle and how the pill will disrupt hormones further.
I had low iron due to a long-standing GI bleed. The low iron caused me chest pain that was sometimes bad enough to make me call an ambulance because I thought I was having a heart attack. Improving my iron levels eventually reduced my chest pain but it was a slow process.
Since you are taking iron pills please take each pill with 500mg - 1000mg vitamin C to help your body to absorb the iron. The vitamin C also helps to mitigate any constipation caused by the iron. You need to get your ferritin level up to mid-range, so it is vital to start getting hold of copies of your test results including reference ranges. It is very likely that your doctor will stop prescribing iron before your ferritin is high enough. Without your test results you won't know this has happened. Don't worry, you can buy prescription-strength iron supplements without a prescription if you know the right pharmacies to go to (Boots insist on a prescription).
Please note that you must take thyroxine and iron four hours apart. So, take your levo first thing in the morning, then your iron at lunch, evening meal and bedtime, or take iron at breakfast, lunch and evening meal, then levo just before bed.
Like Marz above, I am wondering about how you treat your acid reflux. If your gut is in bad condition then you won't absorb nutrients, medication or supplements very well and you could be deficient in lots of things. Having low acid is a typical hypothyroid symptom by the way, but from the point of view of the sufferer it feels like they are suffering from too much stomach acid.
Some reading for you on the subject of low stomach acid - the articles are all short :
It is possible that your body is unable to convert the levo (T4) you take into the active hormone T3, and the T4 is pooling in your bloodstream unused. Your results would then look great as far as your doctor is concerned, but you will still feel hypothyroid. In order to prove that one way or the other you really need to know your FT3 level, but getting the NHS to test it is very difficult or impossible, so you may need to pay for your own blood test privately. If that is the case, ask for advice on how to do it as cheaply and reliably as possible. Your chest pain might be caused by low T3, by the way.
I thank you all immensely for the replies and information.
I currently feel like I have no life and I'm constantly worried about what other symptoms are going to crop up and debilitate me even more.
I've awoke this morning and taken my 100mg levothyroxine first thing and waited over an hour to have a cup of tea. I'm waiting another 3 hours to take my combined pill, and then my first iron and vitamin d with my lunch.
My lower legs are still in constant pain, chest pain is still lurking but feels like a bruised sort of pain this morning rather than the normal stabbing taking my breath away. I feel very nauseous again but I'm hoping that will subside later.
I have an appointment to see my GP of the 9th September so I need to persist for all my blood results.
I've seen 2 GPs and 6 endos at various hospitals, luckily I found an endo that would prescribe NDT and yes, I supplement it by buying some off the internet and keeping it in the freezer!! You sound like I was before discovering NDT!! Don't despair is all I can say.
oh you poor thing! Honestly I don't know if I can help. I am in Australia and we have different medication names. I take thyroxine 75mcgs daily plus Tertroxin (t3) 10 mgms morning and lunch time. Thyroid problems are different with everone. I was on 125 mcgs thyroxine for years and put on weight and when I reduced the dose to 112.5mcgs myself was able to lose 10kgs without trying. I think some of us are just very sensitive to replacement thyroid meds. You are too you to be going through such a hard time. Can you look up some posts from the US and see if you think you might benefit from the combination of the two thyroid supplements? I had to find a new doctor to prescribe the two. You may not metabolise thyroxine properly and need the t3 as well. Your symptoms are not nice and of course part of how you feel is you get depressed. Believe me I know! Please don't give up on yourself. You need to arm yourself with information from the net and find a sympathetic doctor who will let you try, with their support, new things. Have you heard of Pyroles? Your leg symptoms are extreme and you can have a urine test, it is specialised, for pyroluria where your body excretes zinc and other minerals so you are depleted in them. I have this and take prescription medication of zinc, b6 and magnesium which has helped me a lot. All the best, you don't have the energy I know but you have to advocate for yourself.
So many of us suffer with such debilitating symptoms, you have all my sympathy. Unfortunately, although we can all share similar symptoms, they all seem to overlap with different causes so it can be hard to unravel which symptoms belongs to which problems.
I had terrible leg pain, that seems to be mostly sorted with prescribed vitamin D as I was very deficient (and I had to beg for the test too). I don't know what sort of dose we should be on, but I am on more than you (1600iu daily). I also have B12 injections now, which helped with tingling, numbness, brain fog, memory, etc. Maybe what your doctor says is a "normal" result is really too low.
I also have chest pain, which is still being investigated. It is quite scary, but the doctors all seem a bit blasé about it as they have ruled out any major problems I don't think they realise how rotten we feel sometimes.
It's so much easier said that done, but hang in there.
You poor thing. No you are not going mad. All the things you have mentioned can be thyroid related. Have you seen an endocrinologist ?.If not insist on seeing one and by the way you are entitled to have a copy of your results although some Doctors charge for this.
It would be helpful if you take someone with you when you see your Doctor as you are probably not feeling up to sticking up for yourself.You need someone to get a firm grip of your treatment .Don't give up I'm sure you will get through this tough time.
Marz has already mentioned B12 deficiency. Many researchers believe leaky gut and intestinal disease is the ground zero of autoimmune disease and thyroid/PA/B12 def. are often linked both ways with symptoms overlapping. What many GPs consider normal B12 results are not, as "deficiencies begin to appear in the cerebral spinal fluid below 550 pg/ml." - 'Could it be B12?', by Sally Pacholok and Dr J.J. Stuart.
The fact that you say you have been a vegetarian since the age of 13, take the contraceptive pill, which will have depleted B12, and PA is in the family, puts you at very high risk and it seems highly likely that the leg pains, anxiety, chest pains, etc are neurological symptoms of B12 def. Very few GPs understand the symptoms and are only looking for anaemia and large red blood cells, which is the last stage, may never appear, or be masked by high folate. Devastating neurological symptoms can appear before this stage and should be treated aggressively without delay.
Here are more helpful links you may not have seen:
Just to say that switching to taking levo to bedtime made me sleep better, and easier to time other meds, as just not eating for two hours before bed isnt' so difficult. But look into NDT as well.
Once again, I can't thank everyone enough for the responses and words of advice.
I have currently stopped taking my contraceptive pill as I am worried this is causing the leg pains, and also perhaps chest pains. I know this is unlikely but I just want to eliminate as much as possible.
I take the combined pill as I have always suffered with heavy and irregular periods but obviously due to my scarring the pill has helped.
In regards to my B12 I will keep persisting as my GP maintains it is fine along with my foliate levels. Both my blood aunties have b12 injections and my father takes tablets.
I will keep you updated and once again thank you all. X
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Where you are in any range is so very important if we are to feel well.
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