So long story short.. After changing my doctor as she refused me any medication even though my bloods clearly showed I was hypothyroid and antibodies showed that I had hashimotos I have been started on 50mg of levothyroxine (accord) and have now just had a repeat blood test 8 weeks since starting meds.
Initial bloods dated 5th November 2020 showed
tsh 13.31 range (0.3-5.6)
FT4 5.2 range (5.2-14)
Tpo antibodies 1159.8 range (0-35)
Bloods as of 2nd February 2021
TSH 3.84 (0.3-5.6)
I have a new doctor at the same surgery as before but she has literally only asked for TSH levels to be checked. As it’s come back in range she’s said no further action needed. 🙈
She was very nice and listened when I spoke to her initially and I called to make another telephone appointment but I have to wait till the 19th feb. I am still really suffering so badly with feeling so cold, exhausted, dry skin, brain fog, and one one thing that I just need help with is the excruciating pain in my muscles and joints in my legs and feet. In the mornings I can barely walk but it does ease slightly through the day although always very painful. I walk my dogs to keep moving and keep my body active to try to help but by the early evening I am crippled in pain again barely able to walk. I’m 48 and feel like I’m 108! I am taking vitamin d 2000 and selenium. Without coming across rude I feel like she needs to do full blood work before stating that no further action is needed.
Vitamins haven’t been checked since September 2020 but were :
Vitamin d 57 range (40-250)
Ferritin 100 range (11-307)
B12 237 range (145-914)
Folate 5 range (4-20)
I have also been referred to a rheumatologist (in September) but am still waiting to hear on any form of appointment.
Sorry for the long rambling post ... any advice gratefully received 😊
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Joanne1633
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Unfortunately, very unfortunatey, that we have to read/learn and ask questions as the majority on this forum know far more than the majority of doctors who mostly only look at a TSH result and if it is 'somewhere' in the ranges do nothing at all, despite the patient suffering symptoms.
You have the commonest form of hypothyroidism due to you having antibodies and it is called 'Hashimoto's after the researcher.
Going gluten-free can help reduce the antibodies that attack the thyroid gland until hypothyroid.
Doctors nowadays know no clinical symptoms and we used to be diagnosed with them alone, before blood tests were invented (giving Big Pharm £££££s).
Once we're diagnosed as being hypo, the aim is a TSH of 1 or lower -NOT somewhere in range (i.e. which is up to 10 before being diagnosed which I think is ridiculous as they are ignoring clinical symptoms (as they know none).
I really do not know how stupid the 'knowledgeable' doctors are who make up these guidelines. They forget that it our whole body that is affected - from head to toe - so we need doctors who treat patients' symptoms and who do not rely upon a TSH alone.
Others will be along to comment upon your other results but you have to have a test to confirm that you do not have Pernicious Anaemia due to your low B12 because if we have one autoimmune disease we can have others. I have quite a few now.
All of the following are too low:-
Vitamin d 57 range (40-250)
Ferritin 100 range (11-307)
B12 237 range (145-914)
Folate 5 range (4-20)
p.s. I would ask GP to test B12 to exclude pernicious anaemia. Another autoimmune disease.
Thank you so much for your reply ... I appreciate the info. I wanted to gather as much as possible so that I can go back to my gp with valid and justified reasoning for needing more thorough blood work etc .. you’ve helped.
Quite frankly very few GPs seem to have very, very little knowledge about dysfunctional thyroid glands, unless they or a member of their family has hypo or hyperthyroid.
Before blood tests were introduced, we were always diagnosed upon our clinical symptoms alone and given 'NDTs' (natural dessicated thyroid hormones) that contain all of the hormones a healthy thyroid gland would provide. Unfortunately, those 'who should know better - but have no clue about NDTs since they've now been withdrawn. NDTs contain all of the hormones a healthy gland would have and were prescribed from 1892 onwards and were the first replacements that saved people's lives.
It's worth finding out if you have any food intolerances. When I was beginning to seize up I took a food intolerance test. After 2 or 3 months my joints were much improved and my lifelong indigestion cleared up. It takes time to clear the things that disagree with you from your body. I won't tell you what my main problem foods were, as yours will be different from mine. Even within the family they can be different - my daughter's are not the same as mine.
I don't think that any NHS doctor will test for food intolerances unless it's bad enough to be an allergy. You'll have to look elsewhere. Maybe some of the labs on the ThyroidUK list will offer tests. Here's the link. thyroiduk.org/help-and-supp...
OK so it's "in range". That's clearly better than before - but you are aiming for "optimal" not just "in range" and are currently only on a starter dose of levo. SO where exactly "in range" are you?
The aim of a patient on levo is for TSH to be no more than 2 and probably less than one [and for both "frees" to be nice and high but we'll gloss over that for now as you only have the TSH result]. So if your TSH is not yet less than 1, will they give you the dose increase of 25 mcg a day your symptoms show you need please?
This is what I was hoping someone would confirm for me here as this is what I thought. When I started on 50mg of levothyroxine 10 weeks ago I did have a couple of weeks where my feet and legs weren’t so painful in the mornings and I felt like my body was thanking me for helping it a bit but now it’s begging that I give it the right dose as I’m now the same if not worse than I was before.
When newly diagnosed and given levothyroxine, you should have a blood test every six weeks (fasting - you can drink water) and allow a gap of 24 hours between your last dose of levo and test and take it afterwards. We should give given increases in dose about every six weeks until TSH is 1 or lower - not somewhere in range as many doctors seem to believe.
As you'll see , most people have TSH under 2, and closer to 1. Hardly anyone has anywhere near 4.
Show this graph to GP ...she might learn something about 'normal'
TSH (thyroid stimulating hormone) is a message from the pituitary to the thyroid asking for more or less thyroid hormones (T4/3) to be produced. Once your thyroid is unable to respond adequately anymore then it is a message to the doctor to increase dose.
A low number like 0 = "enough already" and a high number like 10= make more quick"
3.48 means " i'd still like a bit more please . i'm not happy yet"
Ah thank you that graph is perfect ... 😊 and the explanation of how the TSH is only the start of the bodies response is really great. “I’d still like a bit more please ... I’m not happy yet” is exactly how I feel right now... I just need to get the doctor to understand.
Oh dear me. I can see why you would feel rubbish, as you are clearly under medicated. I am not at all knowledgeable about vitamins, but they don’t look great either, do they?
If you can afford it, and if you can’t get any joy out of the GP regarding further testing, I would suggest private testing is the way forward. I spent years resisting it because I resented “paying twice” as I thought of it at the time, but it would have saved me years of ill health, quite literally. I like the feeling of control it gives me and frankly battling the NHS when you are unwell is stressful, frustrating and so often with thyroid, leaves you on a hiding to nothing as you know only too well from your own experience, sadly.
And Thriva let you build your own package, so you can restrict to the vitamins you are working in, or whatever suits your strategy, really. And others have offers, etc...
I do feel for you. It is so frustrating when they just won’t listen and (effectively) gaslight you with “in range”, which whilst true, is very different from “adequately medicated”, which surely ought to be the goal of treatment.
So sorry to read yet another member's negative experience at the hands of those charged to "first do no harm". Fortunately you have arrived here ( as I did some years ago) where knowledge and experience of thyroid disease far exceeds that of most medics. You should not be left suffering as you are....medics decided that I had Fibromyalgia, CFS, IBS and so on and I had numerous tests, scopes and scans both NHS and private. None of them recognised that I was being wrongly diagnosed and wrongly medicated!
Modern medics are trained to consider TSH as the gold standard test which is complete rubbish....research proves that. Thyroid function cannot be accurately evaluated without the following lab tests
TSH
FT4
FT3
Vit D
VIT B12
Folate
Ferritin
Antibodies
In your case all are sub-optimal and you have thyroid autoimmune disease (Hashimoto's)...you are hypothyroid and need to be medicated! Your TSH levels will fluctuate with Hashi's. hence a poor guide for treatment. The frees are the essential numbers. The active hormone is T3 so an FT3 reading is, for the most part, the key!
"In range" means little....each patient has an optimal level for good health. We are all different with different needs.
shaws has already given you good advice...pay heed to that
I suggest you first optimise those nutrients, they are essential to support thyroid function.
You will then need to be medicated starting with 50mcg levothyroxine, retested after 6/8 weeks and the dose increased by 25mcg....this needs to be repeated until symptoms resolve.
Sadly there is no quick fix so you need to be patient ( I found that difficult but stuck with it!) increasing too fast before the body has time to adjust is just setting you up for failure.
Thanks to guidance from experienced members I discovered that I have a form of thyroid hormone resistance, despite the fact I could eventually barely function I don't think there was a snowballs chance in hell that medics would have discovered this, and I would have continued to deteriorate. I had to do a huge amount of reading from reliable sources and would advise anybody to do the same....knowledge is power.
You can do this too, we're all here to support you, we've all been there!
Hopefully your GP will learn something too!
I was 70 when I arrived here so never too late to turn things around!
Ah thank you so much for your words of wisdom... I’m reading up as much as I can as I feel that we have to be our own advocate. The gps think that throwing 50mg of levothyroxine our way resolves issues “just like that” and it’s so not true. I know that we don’t have a quick fix but knowing that your gp is supportive and listens when we say we feel rough goes a long way. I’ll keep you posted on how I get on .
The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS 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
Obviously you need dose increase up to 75mcg and bloods retested 6-8 weeks later
GP is clueless
Can you see different one?
Print these guidelines out
guidelines on dose levothyroxine by weight
Even if we 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.
Many people find Levothyroxine brands are not interchangeable.
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Teva, Aristo and Glenmark are the only lactose free tablets
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Accord do not make 25mcg tablets.....so you will need to get increased number 50mcg tablets per month and cut 50mcg tablets in half to get 75mcg dose
(or alternate 100mcg and 50mcg tablets)
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but beware 25mcg Northstar is Teva
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap. Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
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