Im new on here and its taken me a few weeks to pluck up the courage to post. I was diagnosed with hypothyroid in August '19. At that time my tsh was 23.89 (0.55-4.78) free t4 7 (10-25). Thyroid peroxidase antibody 2515 (normal <60, equivocal 60-100, positive >100). I was told I was underactive and "it was just one of those things". I only requested my bloods a week ago after reading some of the info here so the antibody result was a bit alarming but I'm unsure whether that's normal or not. The result that is...not my reaction!! I started on 50mcg levothyroxine and my free t4 has hovered 14/15. I had an ongoing battle with gp who kept refusing to increase meds even when I'm presenting telling him I feel like I'm dying. He offered me antidepressants and suggested that I was "45 now and maybe just had to learn to live with it" he was binned and current gp is supportive. Meds increased to 125mcg over time. Feb '21 results are free t4 14 (9-19.1) tsh 0.03 (0.35-4.94). Current gp not concerned about tsh as on thyroxine but can't do any more without further guidance. I'm still unwell. Sleeping 9 hrs a night some nights but sleep quality seems poor, brain fog, tingling hands, sore feet and joints and muscles but definitely better than I was. My biggest issue is I used to run a lot 20+ miles a week but my body just won't do it now. I cant get breath and my legs seize up..Will this ever improve? And should my t4 increase when you increase meds? I'm not convinced more levothyroxine is the answer. Last increase took a while to get used to. Apologies for the long rambling post but its quite nice to write it down to share with others who know how I feel! 🤗 . It upsets me to read the suffering that others go through and the offerings of other unnecessary drugs. Before my diagnosis I kind of lost the plot. I was really quite mad! I had mood swings, paranoia, low mood, poor stress management, temper tantrums, anxiety. The list goes on! These have all improved as the meds have increased. I think the impact of low thyroid on the brain is missed hence you have folks on antidepressants when really they are under or not medicated. The management of thyroid conditions is poor and that seems consistent throughout the UK!
Any advice welcome.
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BiscuitBaby
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I'm glad your new GP is such an improvement on the old one. That's a helpful start. But I suspect you are still probably under-medicated. I suggest:
* booking another blood test - it's really important that this is in the early morning (when TSH is highest, even though your GP is sensible and not TSH-obsessed), and we recommend leaving 24 hours from your levo each time (so there is a good representative level of hormone in your blood and it's consistent) and you stop any supplements with biotin in a week before (as this can distort results). Take the next levo straight afterwards
* seeing if the GP will do full testing - that means TSH, free T4, free T3 and key nutrients - ferritin, folate, vit D and B12. I've had some success with mine by saying that these are the tests recommended by Thyroid UK
The nutrients matter - and many hypos need to supplement to have these half-way through range and vit D in 3 figures.
You are aiming for both free T4 and free T3 to be two-thirds through range - so free T4 is currently on the low side. If free T3 is even lower through range this would account for your not feeling properly well. T4 is the inactive hormone produced by your thyroid which needs to convert to T3 - the active hormone needed in every cell in your body - so it's really important you have enough free T3 to do the job properly
Your high antibodies confirm that the reason you are hypo is Hashimoto's - the biggest single cause of hypothyroidism. You can't cure it and your antibodies will go up and down irrespective of anything you do - so they're nothing to worry about. A lot of Hashi's people find it helpful to go (fully) gluten-free - so that may be worth a try. And/or dairy-free.
You mention difficulties getting used to a dose increase ... Do you always have the same brand of levo? Which brand? Some people are very "brand sensitive" - they are not all the same: the fillers are different. In particular, lots of people struggle with Teva (it's also Teva in 25 mcg Northstar packages) - which is lactose-free but contains mannitol, although a few others actively prefer it and a third group don't mind either way.
If you are sensitive to the brand, "yellow card" and that don't suit and get the GP to out "not X" or "Y only" on the prescription - but still always check you've been given the right brand before you leave the pharmacy. If you end up with a dose that doesn't come in a neat number of whole tablets - eg 175 mcg a day - it's easy enough to halve a tablet (so you would get 100s and 50s prescribed) or to have 150 mcg some days and 200 on other days rather than have 25 mcg tablets prescribed (which often seem to be Teva!)
Thank you. New gp asked whether I might be vit d deficient but as I still run and cycle I'm out a lot. When I say I do it, its not easy and I force myself to go out. I feel mentally better when I'm more active. But I assumed that I wouldn't be so she didn't test. I think ill mention the thyroid uk site next time. She did warn me about mis information but everyone is so knowledgeable here and the links to papers and guidance is good. I naively thought after diagnosis that I could rely on gp to manage but that's not looking likely. Its been a year and half and I'm still thoroughly fed up and its tiring trying to stay on top of my own self!!! I was considering private testing but the choices are overwhelming really. I've been waiting 3 weeks for gp to get back after speaking to consultant. I think ill just order them up and see what they say. The gluten thing woukd be tough for me. I luuuurve toast. Thank you though its helpful. Its nice to share with others who understand. I'm also aware that I'm faring better than some others though so my thoughts go out to them. Its hard to fight when you feel rubbish
Welcome to the forum BiscuitBaby, As many of us have similar experiences so you will get lots of advice & support here.I used to do lots of x country running, but found that I was aching so much I had to reduce (well, I started spinning & Pilates to give me a different‘fix’). What I’ve learned is that your body needs time to adjust to medication & heal and that over exercising makes this worse, as does cutting down on fats/ carbs. I feel so much better since being gluten free & having key vitamins optimal. I also feel massively supported being a member of this forum, as I know I can easily contact others with knowledge & experience, for both advice & support. I’ve learned far more here than from any medic I’ve seen! Best wishes to you 😊
Thanks. I have reduced exercise. Just not able. Picked up running again about August last year when I started feeling better. I was doing good pace had increased and times reduced but that's gone back in the last month or so. I did start swimming but pools now closed. I live fairly far north of the border so although there's a big community of wild swimmers, I fear I'd die of hypothermia if I tried it! 😅. I'm just disappointed I'm not well by now. It was sold to me as taking a tablet everyday and you'll be better in a few months! Reckon I'll have to give up toast for the good of my health.😔. That seems to be tge general consensus!
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially as you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Do you always get same brand of levothyroxine
Which brand
What vitamin supplements are you currently taking, if any?
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is under 2
When adequately treated, TSH will often be well under one.
Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)
Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Come back with new post once you get vitamin results
Thanks for this. T3 never been tested or vitamins . Am going to do private test then approach gp. I'm also going to check my health board guidelines on testing and prescribing. Am going to try gluten free once results are in. Leaky gut sounds awful!!!
Unfortunately Levothyroxine has a very poor absorption rate into the bloodstream. It is so important to take your medication on an empty stomach with water only. Hence fasting through the night and then taking it first thing in the morning is according to my Endocrinologist. Equally important is the need not to drink or eat anything other than water for at least after half an hour since taking your medication. I would recommend leaving it for at least an hour if you can before eating or drinking other than water. Moreover avoid caffeinated drinks which adversely affect the absorption levels of Levothyroxine. I am finding I benefit from reducing my diary and gluten intake too. Lastly, get your Doctor to refer you to a Hospital Endocrinologist as soon as possible to see how stable your thyroid levels are. Hope this helps and all the very best as I know it’s no fun when your thyroid is struggling to perform as it should do! 😢
Thank you. I don't eat in the morning and avoid coffee etc first thing. I'll try the gluten thing. I did it before, not for thyroid reasons but I'll give it a go. Its hard to have to try and think about being so organised about lunches when I'm at work. I'm often in the car so a sandwich is convenient. And toast is a treat. 😋. Ive had some tips on good gluten free bread though so thats good. Im going to wait till the tests are done and take it from there. I just didn't expect to feel so crappy after this length of time. Here's hoping things sort themselves out after that
Hi, I feel for you what you have gone through and going through.I was started on 25 levo then increased to 50 and stayed on that dose.
I also changed my gp but as that was last year, I have not really spoken to him about my under active thyroid, I have several health issues and as my previous doctor was getting far too old 80+ I felt I was not loomed after.
The first thing my new gp did via a telephone appt was refer me to cardiology because of my history. One of my problems is my symptoms cross over so not as easy to define as just being down to hypothyroidism.
Most of the things you mention I too have felt and its up and down.
The poor sleep aches and pains, tingling etc fatigue. I end up taking sleep aid from chemist which does help.
My new gp feels that cardiologist will get to the root of things either something wrong or all ok. Once that is sorted then I will get other things looked into. I have no clue about all the numbers from bloods I leave it with the doc, at least with him I do not have to ask for a test you are called in. I actually feel I am being loomed after.
Of course things are not the same due to covid but I know if I am concerned about anything I can ring my doctor.
Hypothyroidism has so many symptoms and emotionally it can be a roller coaster. My doc is certainly not about anti depressants, I have been called in a couple of times for him to check how I am get bloods done etc. i do think it is important to have a gp you trust and that you feel looked after and listened to. i am much older than you and to my understanding they prefer to keep the dose lower when you are older. Unless that was just my old doctor, but m bloods must not require a higher dose.
Hi Thank you for taking the time to respond....all of you! Its much appreciated. One of my symptoms is and still is, occasionally palpitations. I had the halter test thing where you were a thing round your neck that is hooked up to things for your heart. (Excuse my very specific medical jargon) that was under the care of first gp. That issue didn't resolve until my meds went up to 100mcg. I'm aware if you're a bit older and you have yo be a bit more careful with dosing. And it is really important that other issues are explored so they are not just waved off as thyroid. An understanding gp is vital but rare it seems. I'm lucky my practice is big enough to change. I couldn't have continued with the first one. Take care to you and everyone else . Virtual hugs to you all.
Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
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