I would be eternally grateful for some help as I am really struggling here with the most awful bad health. Trying to put a brave face on things but it's going from bad to worse. I feel constantly sick, every muscle and bone aching, like a vice is wrapped around my rib cage, chest pain, ongoing back pain, neck pain, arm pain, buzzing in soles of feet and tingling in hands and face .... Totally constipated. Should be losing weight but not. I honestly feel so ill. Was finally put on Levo in July 100mcg and 50mcg alternate days. Since then had injections into spine for back problems which resulted in allergic reaction and have now ended up with pains all over but not sure if it's related. Endo found I had raised parathyroid and said it was due to low vitamin D so gave me supplements and sent me off (private) never to return ... That was in the summer !!! Since then waited 6 months for spot with drug allergy clinic who have picked up my vitamin D is normal 79 (50-200) as is my calcium 2.26 (2.20-2.60) corrected calcium 2.31 (2.20-2.60) but parathyroid is 9.5. (1,6 - 6.9). I am a 51 year old woman and my ferritin is continually high currently at 300 (13-150) and I always have raised CRP and ESR. No thyroid antibodies or rheumatoid factors or lupus.
TSH currently 3.24 (0.27 -4.2)
T4 - 124 (59-154)
free thyroxine 17.2 (12-22)
Free T3 4.1 (3.1 - 6.8)
I have private health insurance but I feel the doctors just push you from pillar to post and nothing gets tied up. I've just got nothing sorted and I'm in a worse state than ever and my GP is pretty useless so I'm left trying to fathom what is wrong with me and I feel like they think I am a hyperchondriac but I feel so desperately ill and Just want to be well again.
Thanks guys!!
April x
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Aprilspring
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Hi April..my days I can so relate to every symptom your describing I've just got to the point that this will be the death of me. I have no faith in my doctor and no understanding .I feel that I'm getting worse it's such a long and painful process ,Im Also waiting for results for MS which are very similar symptoms .I'm sorry I can't give reassurances when im going through the same all i can say is I hope you Feel better soon and get the help and support you deserve and start to feel like a woman again.
Thanks so much for your reply. Gosh so sorry to hear you are in the same miserable boat. You wouldn't wish this on anyone. I have to say that it has scarily crossed my mind I could have MS as I appear to have a lot of symptoms except for "dragging leg". I just don't know what to think anymore. It's like none of the doctors know or care !! I used my private healthcare so as not to be a burden to the NHS but they just don't follow through either !! It's all pretty shocking. I work hard myself and not working is not an option. I need to be well. If you do find any helpful specialist on your road to health ... Please share !!!! I wish you all the very best and hope you get back to good health. Do let me know what your outcome is.
Big hugs (but not too tight around your sore bones and muscles .... grrrrrr!!!! ) xxx
Wow I can't believe how many people have the same view about doctors and the nhs when it comes to the LACK of knowledge understanding and empathy they have with us woman who are at are wits end having to live with this dreadful condition.
I mean people who have addictions get more support than us with genuine illnesses..it's crazy 😞 yah lets keep in touch I'd like that,I honestly done have anyone really to talk to about my health conditions and there's so much to read about and take in.its better talking to someone who's going through the same there's always something new to learn everyday.
Youve got a point there about people with addictions - but even thats a bit of a lottery. My, 42 year old son is bipolar and adhd. Addicted to amphet, because on itvthe world made sense. Got himself off it. Got addicted to heroin in rather tragic personal circumstances. Used alcohol to get himself off it. The only help he got here was token help. He was basically writtten off, though he was a scaffolder and never out of work till the heroin addiction really bit. Then he moved out of the area and was inundated with help from all over the place. But addiction is certainly far better understood. My sister in law pn ghe phone the other day dismissed me with Angie, oh shes always ill.
Sorry to here about your son I can relate to him my x boyfriend went through the same thing after losing his sister he also lost his business house and me..some times we can't help what life throws at us and we all deal with life situations differently.
I hope you didn't think I was having a dig about folk with addictions I was merely exspressing the lack of knowledge doctors have when it comes to real health issues.how they no the first thing to do with addicts and how to treat them.then I'm struggling to cope with my endless illnesses and they can't even give me the right or non at all medication.
I'm just slowly getting to the stage that I've had enough.I have no quality of life I'm 43 and I just want to feel like a healthy woman again.😞
Never give up though Jane ... I honestly understand the struggle and the anxiety and low mood this causes but you can't let it win. You can over come this and we will both get to the bottom of what on earth is wrong with us but we also must be strong now and be heard and start making a fuss like other people. I don't like to be seen as a nuisance or bothering the doctor but then I think this is a genuine situation and I pay a
Lot of taxes, I am just as entitled to some level of care as the next person !!! So Chins up !!! Tomorrow is another day and hopefully another day closer to finding out what is going on with our poorly bodies and finding a decent doctor or specialist that can help and also that cares ... Now how great would that be !!!!
Take care and try and get some sleep or maybe you are like me and are up half the night worrying about all your aches and pains ?!!!! Shocking hey !!!
Hi janehop no I didnt think you were having a pop at addicts. I was trying to explain that treatment for addicts is as patchy as it is for everything else - with the added problem caused by stigma. Most people dont realise that addiction is a mental health problem exactly as depression is. And most of the time its ignored or theres just token treatment and support. The other side is the stress that addiction can cause to immediate family. My son stole from us, including my husbands tools of his trade, repeatedly tried to kill himself, even ended up in prison because his underlying mental health problems were not acknowledged. I am sure that the stress has made me a lot more ill than I needed to be. I knew my son couldnt help himself. Underlying it all he is bipolar and adhd (both untreated) and was suffering hell himself. But he is also highly intelligent, practical and creative and a hard worker. We couldn't abandon him as everybody else seemed to. Thankfully his partner stuck by him too at great personal cost and he is overcoming his self destructive impulses. But the counselling he was using has had its funding removed, so now hes got to cope with it with no professional support. Just like us with our thyroid problems. Its an unjust world.
Hi glad things are on the up with your son it's a rocky road and having mental health issues as well just adds to the situation. it sounds like your a very stronger loving family.
I'm not surprised you are feeling awful due to your 'high' TSH of 3.24. (It's nearly high enough to be diagnosed as being hypothyroid - when in fact you have been diagnosed are taking thyroid hormone replacements!!!)
Your dose of levothyroxine appears to be too low for you and some doctors are so intent in keeping the TSH anywhere in the range they think they're job is done. Instead the patient is left floundering, wondering what's going on and thinking I am taking medications but I'm worse than ever! The problem is if we keep appearing in their surgery they are apt to prescribe anti-depressants to get rid of us or to keep us quiet when in fact we are desperately in need of a decent dose of thyroid hormones. You don't need to be einstein to realise that, but it appears unfathomable to many doctors.
We need our TSH to be around 1 or lower or even suppressed. Make a new appointment and ask for an increase. Make the appointment as early as possible (fast too but you can drink water) and leave about 24 hours between your last dose of levo and the test and take levo afterwards. Ask also for Vitamin B12, Vit D, iron, ferritin and folate to be tested too as we are usually deficient.
Always get a print-out from now on of your results with the ranges and post if you have a query.
Email louise.warvill@thyroiduk.org.uk for a copy of Dr Toft's Pulse online article. In it highlight question 6 and tell your GP you need an increase and the whereabouts of your TSH should be. Some GPs ignore this artile despite Dr T being ex President of the British Thyroid Association. The office doesn't open until Monday.
Thanks so much Shaws. My GP will never increase the Levo. Was not going to prescribe in the first place as I never reached over 10 to begin with ... Only a measly 6 in the blood tests but felt bloody awful !! Saw private Endo in London ... Meant to be one of the best ... He also poo-poo'ed my symptoms and said I was basically menopausal and that was masking things !!! Even though I have a strong family history of thyroid and parathyroid problems and I am concerned about the high levels of iron I have that never come down and the high CRP and ESR as clearly I have inflammation as I'm in agony yet they do nothing .... It's so frustrating and the high hyperparathyroidism is concerning and can be dangerous ... Yet again no professional is taking charge. I'm not sure if I need an Endo or a rheumatologist or a neurologist or all of them !!!!!
Sorry for the rant ... At the end of my tether !!!
In Australia our TSH range is between 1.0 to 4.0. I don't know if your levels reflect ours or your range only diagnoses people over 10 as having hypo. I was 2.97 and very sick. Still they said I was fine. It took three years of going to a physchiatrist to realise what I had suspected for 18 years. That I was hypo like my mother had been. It came down to helping myself because no endo, gp or physchiatrist could treat me physical symptoms and crippling anxiety. I was borderline on going into a mental health facility. I went to a Natripath and then was referred to a thyroid specialising GP/Natripath in the USA. They call these doctors Intergrative GPs. This is what you need to do. Look for one. Ask around or look up Google. Good luck
Sorry just an add on. If you are just on Levo I suspect this is only T4 only thyroid medication. You need T3 as well. T4 will keep you hypo because your thyroid needs T4, T3 combo. The better alternative is Natural Desicated Thyroid which has all the thyroid componants in it including T1 and T2 which a human thyroid needs to function correctly. The best brands are Armour and Naturethyroid (which I take). Also if you haven't look up the website Stop the thyroid Madness as it has a lot of imformation that will help you . That site saved my life.
AprilSpring, if you want to see someone privately email louise.warvill@thyroiduk.org.uk on Jan 5 for a list of member recommended endos. You should check with your private health insurer that the endo is on, or can be added, to their 'approved' list.
I think your high parathyroid hormone needs investigating even though vitamin D and calcium are normal.
TSH 3.42 is high for someone averaging 75mcg Levothyroxine daily. Most people feel welI with TSH under 1.0 with FT4 in the upper quadrant of range and FT3 in the upper third. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise if you would like a copy of the Pulse article to show your GP when you request a dose increase.
High ferritin, CRP and ESR indicate inflammation somewhere in the body.
I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
Thanks so much Clutter. The Endo I saw was top London guy who is on the list and is highly thought of. I have to say I was really disappointed in his laissez-faire attitude!!!
I hope you gave feedback to Louise as there's no point in paying for 'nil' help and being fobbed off with 'menapause'. Particularly if parathyroid needs to be investigated.
I really don't know how they become Specialists when they cannot specialise what's causing the patient's symptoms. Maybe they only deal with diabetes.
I have little knowledge of thyroid issues as I am only just beginning to wonder if my thyroid might not be in top form however I am rather a veteran when it comes to longstanding inflammatory issues. Clutter has touched on the inflammation that you are clearly experiencing hence your raised ESR and CRP and I just wanted to reassure you that it is possible to have any number of auto-immune conditions without the expected antibodies.
I have just returned today from an appointment with a leading Consultant Rheumatologist who accepts that there are immune pathways that are not yet fully understood (ie Me!) and this poses a challenge for diagnosis and treatment. I am a mixture of Lupus, RA, AS, MG with Vasculitic features and have been for 25 years but without a single antibody. You need to find a really good Doctor who is prepared to think outside the box and get the right treatment for you. Have they investigated you for Ankylosing Spondylitis? No antibodies show for that and back pain is a feature.
Cast the net a bit wider. The right person to help you is out there. Clare x
Thanks so much for your informative email. So sorry to hear of all your ailments. Blimey this is a mine field. I just looked up AS and I can relate to all symptoms but that seems to be with most things !!!! If you are anywhere near London area can you PM me the details of your Rheumatologist please? I'm getting desperate for a doctor who listens and can put together the pieces of the jigsaw. I just have do get better, my symptoms are glaring yet no bloody doctor can see them !!!
Ask your pharmacist for a drug review. You might be lucky as I was and find one with an interest/ some knowledge about the thyroid. The pharmacintosh can write to your GP. However it sounds like you would have more joy with a referral to a GOOD Endo who you can see privately with the medical insurance you have.
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