Hope this makes sense. Around September last year amongst usual symptoms of Carpal tunnel, IBS, tiredness, aches, weight gain etc I developed a new issue. Initially I thought I'd damaged my left shoulder rotator cuff..I couldn't remember damaging it but I suddenly couldn't raise my left arm past shoulder height and was in constant pain. Eventually went to minor injuries and referred to physio..he prescribed certain exercises to get mobility back..it kind of worked sort of. But something he said pricked my ears..he said we get a lot of people with thyroid issues and this injury. Eventually, after the small improvement in arm mobility, I thought I'd increase my levothyroxine dose by 25mg (I had some spare)from 150 to 175..in two weeks I had far less pain and pretty much full movement back..but then though it might be a coincidence (and I'd finished off the extra pills) so I returned to 150mg. Over the next few months the pain returned, so a month back I obtained my routine 3 month levo prescription and thought I'd increase my dose to 175..the pain eased over 2 weeks..so I called my surgery and attempted to book a GP appointment.(..no chance..)got offered a telephone meds review by a pharmacist instead. Explained the situation and they organised a blood test.
Blood test came back 0.02 ('normal'range 0.3-6) so pharmacist said bad boy, decrease dose to 150 immediately. (Also had a cholesterol test..came back high at 7..same as last year..I really am careful with my diet, vegetarian, minimal saturated fats intake so what with the weight gain I just thought I'm bound to be needing more, not less lexo)...anyhow.Pharmacist said get in contact in a couple of months to make sure your TSH is in normal range. 0.02 is too low ..is BAD..heart disease bad.
Are they right? ..or should I be skeptical and should be getting my FT4 and FT3 checked out in order to get a better indication of where I'm at hypothyroidism wise?
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vivvov
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I am sure the wise minds on here will respond soon enough, I just wish to add in case it is of use that I had the same issue some years ago and I used a shoulder cuff for a few months which helped.
Hi Vivvov, just so you know you are in company, my TSH has been down at 0.01 - 0.04 for the last 5 years and all the while I am seen by an NHS endo. Luckily she takes notice of how I feel. She mentions the heart and bones thing but she is not guided by it, and it doesn't concern me. I am on a T4 and T3 combo. For me, my body very clearly tells me when I am over-replaced. Absolutely you need to know T3 and T4 levels. Good luck.
yes definitely get fT4 /fT3/ TSH tested properly .
if both fT4 / fT3 in range on 175mcg , then it gives you more ammo to argue for keeping your increased dose .
shame TSH wasn't 0.04/ 0.05 instead of 0.02 as there is very good evidence we can use to argue that 0.04 or over has no increased risks .. but unfortunately that same evidence showed increased risks below 0.04
Mind you 'risk' is relative concept ..
So the real question is how do you/ your doctor feel about Low TSH/ Risk vs Quality of Life if a higher dose allows you to use your arm properly.
well worth a read of all of it +the list of other posts i recently added in a reply right at the end , before you have to have a 'low TSH' argument with a doctor .
also this one : healthunlocked.com/thyroidu.... tsh-is-just-the-opinion-of-your-pituitary-about-your-dose-but-your-pituitarys-opinion-is-a-bit-warped-once-you-take-thyroid-hormone.
Frozen shoulder has long been known to be associated with hypothyroidism eg this from quick google search , but there will be lots more if you look: ncbi.nlm.nih.gov/pmc/articl... Association between Frozen Shoulder and Thyroid Diseases: Strengthening the Evidences *
High cholesterol is often ( but not always) caused by being hypothyroid ..if so then it is expected to improve once hypothyroidism is optimally treated.
if you still have have high cholesterol with very low TSH , then i dunno if yours is likely to be related to hypo or not,, but it's another good reason to see where your T4 AND T3 are
You should be very skeptical. And this person should not be dosing by the TSH. It is the least important of the three results, FT3 being the most important. And, I imagine that is low because your cholesterol is high.
The TSH is a chemical messenger from the pituitary to the thyroid, to tell it to make more or less thyroid hormone. It also plays a role in conversion, but that's another story. It has nothing to do with hearts and bones. And, once you are on thyroid hormone replacement, and it gets below one, it is a very bad indicator of thyroid status for all sorts of reasons.
Cholesterol has nothing to do with fat, and very little to do with diet. It is made in the liver (because your body needs it) and the liver goes to great lengths to keep the level stable. So, the more you ingest with your food, the less it makes. The less you ingest, the more it makes. However, when T3 is low, the body cannot process cholesterol correctly, and it tends to build up in the blood. But, it won't do you any harm, it does not cause heart attacks any more than a low TSH does! Doctors are obsessed with hearts, and see threats to it everywhere - except in the right place!
So, if you are feeling well, refuse to reduce your dose. These people are not there to dictate to you, they are there to advise you. And, if you make an informed decision not to follow their 'advice', they should respect that. Of course, if they get stroppy, you could always suggest that they test your FT4/3, and if the FT3 is very over-range then you will agree to reduce your dose - the odds of them doing that are pretty low!
You’re only over medicated if Ft3 is over range …..not low TSH
If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....
The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :
nice.org.uk/guidance/ng145
"Your responsibility
The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "
The link between TSH, FT4 and FT3 in hyperthyroidism is very different from taking thyroid hormone (T4) in therapy. In hyperthyroidism, FT4 and FT3 are usually well above range and TSH is very low or undetectable. In therapy, FT4 can be high-normal or just above normal, TSH can be suppressed but FT3 (the important hormone that controls your health) will usually be in the normal range. FT4 and TSH are of little use in controlling therapy and FT3 is the defining measure. A recent paper has shown this graphically:
Heterogenous Biochemical Expression of Hormone Activity in Subclinical/Overt Hyperthyroidism and Exogenous Thyrotoxicosis
February 2020 Journal of Clinical and Translational Endocrinology 19:100219
DOI: 10.1016/j.jcte.2020.100219
LicenseCC BY-NC-ND 4.0
Rudolf Hoermann, John Edward M Midgley, Rolf Larisch, Johannes W. Dietrich
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
Always do private testing early Monday or Tuesday morning, last dose levothyroxine 24 hours before test
If taking any vitamin supplements that contain biotin…..important to stop these a week before test as biotin can falsely affect test results (biotin used in lab equipment )
Assuming you have autoimmune thyroid disease……. dairy and/or gluten free diet frequently necessary …..but test thyroid antibodies first ……and get coeliac blood test BEFORE considering cutting gluten out
What matters is not your overall cholesterol level but your HDL and non-HDL. My total cholesterol for instance went up to 6 recently (I'm underdosed still) but when prodded my GP agreed that my non-HDL levels('bad cholesterol') were not worrying. Your triglyceride levels are also important. Get a breakdown of these figures and do some research as to 'norms'. GPs are obsessed with normativ levels as these are used by the NHS to prove outcomes. It's very sad. Good medicine not about this. Don't let them scare you with that overall figure.
Difficult to fight them, but your symptom history suggests you need to. Wiser heads will give best advice. If you get blood tests make sure to test vitamins too.
I started with my left shoulder frozen. GP no help. At that point I did not know about the relationship to hypothyroidism. Other shoulder was not brilliant but I let it be in hope it would correct. First shoulder hugely improved/healed with sports massage. Second shoulder got very much worse and I have had to temporarily stop sports massage as it was just too painful and exhausting. I mean to start again but too much on my mind at the moment. Just to add, I know I am under medicated but working on it.
my private endo has just written a letter to my Gps ( who kept trying to reduce my levo.dose) saying a measurable TSH in bloods was ok ( it had been 0.02 in NHS bloods), but then my FT3/4 were only in 40% levels). I do take T3 and levo. You don’t mention your Free T3/4 levels… My endo always adds in the letters that I know the dangers of low TSH and heart and bone problems, but never sure whether he believes it himself!
I know that when my FT3 is to low I get pains I have been monitoring them for months now.
The first time I noticed that when my NDT afternoon dose was due my ankle started hurting. That ankle had been broken back in 1976 and had not hurt since, weird. Next was a pain in my gallbladder, which I had removed back in 2006 so even odder. It's a wonder to me that nobody on here has brought this subject up before. It's as though the brain because of the lack of T3 is trying work things out and gets it wrong. You like me have worked it out.
Hi just to add I thought I had Carpal Tunnel syndrome as a couple of years ago I got pain for months and then I read about several people on Teva brand with the same issue. l checked my Levo tabs as had noticed the packaging had changed a few months previously and sure enough I had been swapped to Teva. I now have Mercury brand named on the prescription and I've had no more issues. Hope thats helpful.
I developed the same shoulder pain as you without injuring myself. I saw a physio at the hospital who said it wasn't a rotator cuff injury like my doctor had said it was. She said it was a frozen shoulder which is very common with thyroid patients.
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