I am am wits end. No one will listen to me. I was diagnosed in 2010 with hypothyroidism. My current levels are TSH >150 and T4 2.8.
I have had issues with the medication (T4 225ug) which also seemed to make me ill. I began suffering from blinding migraines which a times lasted for days. I was given more pills to take, Amitriptyline, they just made me more sleepy. I have had bouts of falling asleep a work and driving my car. Then the joint pains and swelling started, I was given Cocodamol and Naproxen. Some days my eyes are so puffy I can barely open them. 18 months ago I decided enough was enough and stopped taking the meds. The doctor was not happy , since then I have experimented with all the meds taking less etc to see If i can feel better.
My sister was recently diagnosed with Hashimotos Disease and her specialist has recommended that we all get checked out (all the girls in he family have hypo). It was at this time I asked for a referral to the specialist. this was denied many times which led me to finally do a patient referral. I then was diagnosed with a severe vit D deficiency, but the swelling are now lumps like golf balls on my ankles and knees. If I exert myself I am exhausted the next day and struggle to get out of bed.
I have now seen a specialist who was rude and told me that I am a risk of heart failure and coma. All he wants me to do is take T4 and unless I am prepared to take it there is no point seeing him. I would like T3 (he refused this and told me that it was unconventional treatment) or to be fully examined. It seems clear to me that I have a significant problem other than hypothyroidism but no one is prepared to make the links or listen to me.
What can I do?
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Sallybash
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By specialist do you mean endocrinologist? In the UK NICE guidelines do not allow primary care practitioners to prescribe T3. In fact the prescribing of T3 cannot be considered unless you can be proven to be taking your T4 reliably and it isn't working cks.nice.org.uk/hypothyroid... Having said that you have given no result for T3 and won't be prescribed it without. However it is rare to get that tested in the UK. You might be better to get private tests done so you know exactly where you stand physically in the near future instead of waiting for the blue moon to rise over your local NHS services. These are available through TUK at a discount.
Did you start off on 225 mcg of levothyroxine? Sorry I am not an expert, someone with more knowledge than I should be along shortly, but I cannot help but feel that your problems are in large part a reaction to too much of the hormone.
Have you been tested for iodine levels? Iodine deficiency could result in high TSH whilst T4 remains low ncbi.nlm.nih.gov/pmc/articl... in which case you might be able to improve your situation through diet.
Are you now taking a vitamin D supplement? The private tests will indicate whether there are other supplements you need. In the meantime Turmeric works synergistically with vitamin D at restoring mental and physical health. It supports thyroid function AND is a terrific painkiller - better than some 34 different prescribed medications (14 different drug groups). If you can get the fresh root this is the best form to take, otherwise look for curcumin with a 95% concentration. Ginger belongs to the same plant family and can also have benefit of a similar nature.
Thank you for your reply. My T4 was gradually increased to 225mcg. The more it increased the worse I began to feel and once at 225mcg then the prescription of all the other drugs. No other tests for T3 or iodine have been given. I was initially taking my medication for years but falling asleep while driving scared me a lot and I realised something had to be done. I thought if I refused T4, someone might help me.
Sadly the NHS doesn't work like that. In fact I don't know of any service in the UK that does. If you don't comply you don't get help. If you do comply you will undoubtedly be assessed as fully treated so then need to jump through hoops and do somersaults to get anything better but it is your only option - other than looking to yourself as many on here have had to do. Someone with better knowledge than me will be along to tell you how to go about that.
Is your GP part of a practice where you can see another? I went through every doctor in mine before I found the one I now use regularly. I wouldn't touch my own with a barge pole but the guy I see has been really helpful. He ran out of ideas ages ago but if I come up with anything sensible he will go out of his way to help. This included getting me an appointment with an endo to look at T3 therapy. Though it took about 8 years to get to that point.
Living out in the wilds myself I can totally understand the fear that dozing off at the wheel could create. To my mind that simply reinforces what I said about T4 being inadequate treatment but you will get no help from any typical endo unless you comply with basic treatment. You really need a thyroid specialist anyway. Turmeric might help prevent the dropping off as it sharpens brain function amongst its many benefits. The lauric acid in coconut oil also helps improve brain function.
In the meantime I would look to improving any areas where your diet could be said to be failing, particularly on other vitamin and mineral levels. If you follow NHS dietary guidelines you are starting from a disadvantaged standpoint anyway but even that is an improvement on some dietary choices that the food industry and supermarket pricing policies channel us into making.
I know about diet as this is what I studied at uni. I have BSc in nutrition.
I have seen an Endo twice, he suggested trying a different brand of T4. I could see another GP I suppose. The swellings are like jelly, and the pain in my joints is awful.
I really appreciate your advice because I feel like I am going mad.
well there you go - learn something new every day! I was looking up jelly like swellings associated with thyroid function and came across Myxedema. When I got my GP to send me to the endo for T3 I had a thickening of the skin gradually spreading over the back of one hand that exactly matches the description. After T3 treatment it has now gone. I never associated the two until now.
There is also a connection with sleep apnoea. This could explain the falling asleep at the wheel. Sleep apnoea, if it is diagnosed, is one of the notifiable conditions for DVLA. You might find this post healthunlocked.com/thyroidu.... the link within it and some of the comments interesting.
Having said that I wonder if the swellings are bursae. There are enough queries out there in internet land about any connection between these and levothyroxine to indicate that there might be. A different brand of T4 might help. Equally changing to NDT might be the answer for you (others suggest that it has resolved their allergic responses) but I very much doubt that you could persuade any UK GP to entertain that idea - especially if you haven't been through all other avenues first. healthunlocked.com/thyroidu... Personally I would certainly see another GP and rehearse your speech in advance. You need to work up as much evidence as you can so taking your T4 and trying another brand would go in your favour. GPs usually frown upon searching health sites for advice so I wouldn't mention HU but look to research (or your own anecdotal evidence) for support. Is there any chance of getting referred to your sister's endo?
Again I seriously recommend Turmeric for pain relief. Grate about a half to one inch piece into your food or drink every day and you should soon see an improvement. If you cannot get hold of Turmeric you could try fresh ginger. Curcumin capsules would also work but there are active ingredients in the fresh root that could provide added benefit but are not available in the extract.
When and how you take your T4 can make a tremendous difference to how effective it is. What have you been told about that? Some do better taking it at night, others in the morning. For best effect it should be taken two hours before or 4 hours after eating and (most) other supplements. When you have your next lot of tests try to get them done as early as possible and on a fasting stomach and at least twenty four hours after your last levo intake. Time and food cause T4 to rise - though I hope your low result wasn't a post lunch level - and it takes twenty four to forty eight hours for levo to work out of the system.
Weekends seem to be busy times for most members on here so in the meantime you could search the comments of members such as shaws , greygoose or Marz by clicking on their names if you want to search for advice they have given others.
No matter how much levo a person takes, it might not be sufficient. First of all it is supposed to convert to T3, so if we aren't given a Free T3 blood test we will never know if we have sufficient T3 in our body a T3 is the Active hormone required. T4 is inactive and converts to T3.
Also some people have a defective gene which means they MUST have T3 as they cannot convert T4.
When I was first on levo I had a similar experience, so much joint/muscle pain I could barely move.
We have to read/learn in order to recover our health and many members will have had a similar experience to you.
They do not know ANY clinical symptoms of hypothyroidism and when the TSH reaches somewhere in the 'range' they stop increasing dose but are willing to give 'extra' prescriptions for the clinical symptoms instead of a thyroid hormone which suits the patient and relieves all symptoms.
I don't think T3 is prohibited for sale in many countries. Many can buy it over the counter or with a prescription.
I think it was a BIG PUSH by the pharmaceutical companies when they introduced levothyroxine to replace the Natural Dessicated Thyroid Hormones which were dispenses and contained all of the hormones our healthy gland would have produced. I believe it was monetary incentives to the medical profession which turned the tables.
If you read the British Thyroid Association's guidelines you will see that false statements have been made against NDT and that levothyroxine is the only one to be prescribed. (I was more unwell on that than before being diagnosed). I'm fine now but not on levothyroxine. For some reason they don't like to prescribe T3 and again I doubt they know how useful and healthy it is for many patients rather than a miserable life. Even the addition of T3 can be very helpful for some.
Also what suits one patient doesn't always suit another so it can be trial and error.
Thank you for your reply. Unfortunately in the country where I'm living no t3 for sale. Waiting for my t3, I'll get it after 6th of august. I will ask you for advice when I will see the med and will post my last blood test. I'm on t4 only, 175mg taking now. Blood tests were are OK, all in range, except thyroid antybodies. I believe the t3 therapy will help me with fatigue and pain. Talk soon. Thank you. Olga
We have learned on this forum that we never take the words 'o.k, normal, or fine' with regard to blood test results for thyroid hormones.
If we feel good with no clinical
symptoms then we are well and that's the most important thing.
Some doctors think that if the results are 'anywhere' in the range their job is done when in fact we need our TSH to be around 1 or lower with a Free T4 and Free T3 towards the upper part of the level. These are rarely if ever checked.
Obstructive sleep apnoea is associated with hypothyroidism. There's a quick and simple questionnaire to determine your Epworth Sleepiness Score, and then an overnight sleep study at home would determine whether you'd benefit from treatment with a CPAP machine. As you have stated you are dangerously sleepy during the day, it is vital you get this health aspect attended to.
My dropping off at the wheel,loud snoring and sleep apnoea ceased once on levo. You may not be converting T4 to T3 .Vitamins and minerals need to be good to aid conversion .Maybe you will have to access T3 or NDT via the internet. Do you know your levels of B12,ferritin,folate,D3?
The testing will include the thyroid anti-bodies which you mentioned in connection with your sister but not yourself. More importantly it will include the FT3 result which will indicate whether or not you are converting the Levo/T4 you are taking into the ACTIVE thyroid hormone T3. The result needs to be high in the range.
The package will also contain the vitals - B12 - Ferritin - Folate and VitD. ( I know you have been tested ) When these are low in their ranges then the conversion of T4 into T3 can be impaired.
What other medications re you taking - ? Maybe something is preventing good absorption too. Some medications prevent the uptake of Levo.
You have a degree in Nutrition - so have you eliminated things from your diet in case there are sensitivity issues. If you have anti-bodies then excluding gluten can help. Do you have any gut issues ?
If you discover your T3 result is low in the range and that you do have a conversion issue - then you could consider adding T3 in yourself. Lots of people here will guide you. Keep reading the relevant posts.
When you mention going private, I just thought I should emphasise that a doctor is NOT required. You can order testing yourself.
Finger prick testing is exactly what it says - you order a test kit, you prick your fingers, drip blood into little test tubes, and then send the blood (through the post) back to the lab for testing.
Testing which requires a blood sample from the crook of the elbow can also be ordered, and depending on what and where you order, the phlebotomy may be included in the price or you may have to arrange the phlebotomy yourself, which usually adds to the cost.
Am so sorry to hear how poorly you are feeling and that the endocrinologist was rude. Last thing you need. Could you be allergic to the levothyroxine? Some of the symptoms you describe struck me as typical of some intolerance. Could be the fillers.
I am on a NDT on the NHS so it can be done. However I have to be very careful over which one I use as I do react to different fillers in the tablets. For me what happens is that I am unable to absorb as well so end up feeling hypothyroid but being jittery. On the one that suits me all this went.
You can get a pure form of levothyroxine-surprised your endo didn't suggest this.
I agree with others that the falling asleep needs to be taken very seriously and needs checking out further.
Your GP can get a ft3 done if they put management of HyPERthyroidism on the lab request.
Hiya that sounds awful but I'm not surprised at all as I have read that they are not allowed to prescribe T3 to new patients due to the cost! Can I suggest a couple of things join the Vitamin D Wellness group on FB and follow their Vitamin D Protocol.....I've had amazing results, my TSH has ranged from 25 then 17.9 then never lower than 7.9 for over 18 years suddenly after following the protocol for 6 months my TSH is 0.02 and I haven't started taking NDT yet. From my research if you have low Vit D, B12, folate ferritin etc then your body can not transport the T4 efficiently so addressing those issues first is a good place to start. Also read STTM book it's fantastic ..hope this helps
I was diagnosed with hypothyroidism in June 2015 and was put on thyroxine with doses varying from 100 mcg (to start) down to 50 back up to 75 then to 100 again and I felt awful, particularly the last six months. I decided it was the pills which were making me feel so ill. I am weaning myself off them and am now in week three of no pills at all. Weeks one and two were pretty hellish as my body had got used to being pumped with the chemicals but I am glad I persevered because I am at last beginning to feel like my 'old' self. I need plenty of sleep and a good diet and am also taking Kelp and a good all round mineral/vitamin pill each day. My appetite has returned and last night I was able to go to a party and have three glasses of wine enjoy myself. So, don't be fobbed off by these wretched NHS doctors who are determined to keep filling you with T4. Good Luck and try and find a doctor who will treat you as an individual. Most people feel fine on thyroxine but there are a few of us who do not suit it and all the the terrible side effects far outweigh any benefit of the drug. There are endos out there who will prescribe T3 and I have found a private doctor in London who will prescribe the natural Armour - if Hillary Clinton can do what she does at 68 on Armour how can they say it is rubbish? If I feel I need something in due course, I am determined to try that.
I had terrible muscle pain and could barely move after 7 years on T4. I just stopped taking it. Within a couple of days I felt I had improved. Now on T3.
My NHS GP was more than happy for his Nurse at the treatment room to do the blood draw. Said it was the least he could do as I was paying for the Blue Horizon test. Have you thought of going gluten free? Also look up Mast Cell Syndrome - you could be allergic to many things. Hope all goes well for you and you get the help you need very soon.
I have soft lumps like golf balls on both of my feet. And another lump like a sausage on both as well. Showed them to the GP. She just said they were liposomes, were harmless and that anyone can get them at any age. Personally I think they are due to my Hashi's not being properly/sufficiently treated as they are exactly the same on both feet. Plus my arms and legs are also puffy and swollen.
I too had a similar experience too you, tsh was 198, not sure of the rest and not got to hand, was on levo for many many years always felt I'll, got put up to 225, the more I took the worse all my symptoms were, doctors were no help, endo said I was depressed, it was all in my head. I stopped taking it, and for a few weeks felt amazing, short lived, soon felt poorly again. Explained to doctor, but was told there was no other treatwenty, restarted levy, was just the same. 3yrs ago I think now, I came on here and gained lots of knowledge and advice, and am still learning now. I then also got a new endo, a one who listens, understands, has done lots of tests, put me on just t3, things improved tsh came down to 75 then 39, still not the best, I kind of learned to live with it all and push myself everyday. Need to work full time, do home care, Long long days not much rest, which didn't help. That's all I could do, no energy left for a life, plus tired of other symptoms. Endo decided to try ndt, so greatful she listened to me. Just tried it in the last 2wks, unfortunately it is not for me, I felt worse back to how I felt on levo, so poorly, can't get to see Endo for months, doctor is useless, looks to me I can't tolerate t4 in any format, i put myself back on t3. It is taking along time to get to this stage, it is an improvement, I won't give up, will keep moving forward and gaining more knowledge until I am on top of it, wish I had known what I know know years ago. People on here will help you, they helped me a lot. All the best x
Princessze. Interesting. Sounds like we're similar. Rubbish on t4. Ok on t3. Last time I saw the endo his only suggestion was to try NDT. I'm scared to disrupt how far I've got. How did you do the switch?
Loueldhen, I was just told to stop t3 one day and start NDT the next day, it took 7wks to get, as no one in my area has ever been prescribed it before, even when I picked them up no one had any information for them, storage how to take, side effects nothing, just a bottle with take 2 once a day. This is what I did, the first couple of days I did think it was the answer, felt like what must be normal, was wonderful, but as the days went on , I couldn't get up on a morning, had pains in my legs, headache, felt like I needed the toilet all day (poops), energy levels dipping every hour, then my worst feeling, the puffy face and eyes, blurry vision and cotton wool head, and body feeling bloated. Couldn't carry on, stopped it and went back on t3, it's no way perfect on t3, there must be more I can do, I long for that normal feeling, or near to it. That's just me, maybe it will be the answer for you,
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Need Help!! with dosage T4
Advice on what to ask Dr
HELP PLEASE - I'M CONFUSED!
Hypothyroid? or am I just a victim of anti-depressants side effects ?
Need help.
