I am new to the world of Thyroid disease. I have been diagnosed with hypothyroidism however my numbers for the tsh are only slightly elevated, however I have TPO antibodies of 502. With >50 being positive. The doctors still aren’t talking about Hashimoto being an option as I’m only 25 years old and I’m “too young” I’m due to have a ultrasound but not sure what else I should be asking for since I’m not falling under the category of normal it seems to be brushed aside. I would of just assumed because I’m quite well in the positive for the antibodies and I have a huge amount of the symptoms it would be more considered.
Just feeling a little frustrated
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Kiwiskater
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About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s.
Gluten intolerance is often a hidden issue too. As per NICE Guidelines Request coeliac blood test BEFORE considering trial on strictly gluten free diet
I haven’t been started on levothyroxine yet as they want the ultra sound done first.
My recent results were the TPO of 502, TSH 5.36 slightly over the 4.20 and serum free T4 14.8 so normal. T3 hasn’t been done. These are the only ones they have done in the last group. Other then checking my Parathyroid hormone and bone profile today. Then the standard tests in November where I have been seen to have low iron.
I will definitely look into the vitamin tests you linked below.
Kiwiskater, so sorry that you have had to endure medics who understand nothing about thyroid. You are way over range with antibodies, there is no denying you have autoimmune thyroid disease. It has nothing to do with age. the same type of medics tell women they can't be having an early menopause because they are too young, but have they tested their hormone levels?I have Hashi's (as we refer to it on here) I did go on a Gluten free diet and it did help. If you can afford a private blood test I would suggest you get TSH, T4 and T3 tested. Your T4 looks on the low side to me and likely your T3 is too. Most NHS blood labs won't test T3 unless instructed by an Endocrinologist.
Hopefully a scan of your thyroid will show what's happening. Mine had shrunk away markedly. Good that your parathyroid and bone density have been checked. Low iron is pretty typical, also low Vit D and B12. good luck with the scan
Hi Kiwiskater. I think your experience with the Dr is fairly typical given your results and my own experience. Having antibodies is not a reason on its own to medicate and even having symptoms as well would mean a Dr wouldn't medicate. It's not until your TSH becomes very out of range eg 10 and T4 below the range that Drs will consider medication. Until then they tend to monitor the situation. I was in range but near borderline for T4/TSH in 2014 with high antibodies, but it was 7 more years before I was eventually medicated. I was very out of range, and very ill by then but lockdown and covid had interrupted the monitoring of my levels. Age doesn't come into it as many on here have already said.
The reaching a TSH of 10 before being treated is not always the case. I and a few others (I have read on here) have been treated below 10 . I was just under 6 when diagnosed. Sadly thereafter they stuffed up….🙄 I think the latest NHS guidelines have recommendations on considering symptoms too😱🤣. I got to full therapeutic dose despite being ‘normal’.
The reaching a TSH of 10 before being treated is not always the case. I and a few others (I have read on here) have been treated below 10 . I was just under 6 when diagnosed. Sadly thereafter they stuffed up….🙄 I think the latest NHS guidelines have recommendations on considering symptoms too😱🤣. I got to full therapeutic dose despite being ‘normal’.
My profile maps my journey 😊👍
Please do not be put off fighting for treatment by arbitrary test ranges set by flawed science. If they had a clue they would be using direct measurement of actual thyroid hormones to manage conditions.
I can assure you that age has nothing to do with anything. I have a strong familial background of hypothyroidism. My sister was diagnosed in her early 20s.
Apart from the remark made by your GP about being too young to have Hashimoto's/autoimmune thyroiditis, they are actually doing a pretty good job, believe it or not! You have already been given a diagnosis of hypothyroidism, even with just one level slightly out of range, which many GPs will not give, a wide range of blood tests has been ordered range and a request for a scan has not only been made, but accepted! The delay before being put on medication is probably due to the GP thinking that your symptoms could be due to other conditions, and wanting a complete picture before medicating. Treatment for hypothyroidism is the same whether autoimmune or not, so you can ignore your GP's rather odd comment in that respect! However, many people with antibodies never develop hypothyroidism, so your GP is just being cautious before medicating in case it is unnecessary. For thyroid treatment to be effective, vitamins and minerals need to be optimal, as deficiencies, such as in Vit.D, B12, folate and iron are common with hypothyroidism, and can produce their own debilitating symptoms. I am sure when your GP has all the information they need, any treatment necessary will be given. A wealth of helpful advice and links can be found from "The Invisible Hypothyroidism", and the associated FB group "Hypothyroid Family Hypothyroidism Advice and Support Group", founded by Rachel Hill, a young Hashimoto's sufferer in the UK, who is now a well-respected and award-winning adviser on all matters connected with hypothyroidism. Great for newbies and existing hypos alike! Never forget that the majority of people with this condition do well on levo and being monitored by their GP, myself, family and friends included), but you rarely hear from them on a forum such as this. Remember, too, that not everything is thyroid-related, and a lot of us have other conditions that need to be addressed, many of which can produce symptoms similar to those of hypothyroidism. Take everything one step at a time, making sure you get regular testing and medication adjustments when necessary. Patience is needed to arrive at the correct dosage for each individual, unfortunately, but you will get there in the end.
Thank you so much for your reply. I come from a long family history of hypothyroidism so unfortunately I am the 4th generation to have it passed down, so I think that made it easier for the doctors to push for additional testing. So far they have done what is listed above and I have also had my parathyroid checked and my bone profile checked, they really have been amazing at trying to look for everything but partly because this was all bought up because I have excessive thirst which flipped their warning bells even though it isn’t a normal symptom what so ever. I feel almost relieved because I have felt off for the last year and my previous doctor and clinic refused my request for the TSH test. Just nice to know something is actually off and it’s not just me being pathetic
They are dragging their feet, keeping riding their backs and make them take note of your symptoms. Plus a history of hypothyroidism in the family very pertinent fact.
Ironically there is hypothyroidism in my family - dad had it (diagnosed), but I think my mum may have been undiagnosed and my nan (her mum). Both passed now, but both complained of a ‘small swallow’ and there were physical markers chronic weight gain, joint pain, plantar fasciitis, bullfrog throat, eyebrows - losing outer third. Too late to know, other members of my mum’s side of the family have actually been diagnosed with hypothyroidism.
I do wonder how many people get to the end of their lives undiagnosed 🤔
My mum was unwell escalating to chronic the last 40 years of her life poorly for last 20 years …….. everything else she had was diagnosed, but the possible root of all her ailments was never considered. Each one was considered individually - a massive failing in the NHS. This reductionist approach did more harm than good to my father also towards the end of his life……….
We really do have to be our own advocates. 😊👍. I too read ‘be your own thyroid advocate’ and it was accessible enough to get be started and inspired . Once the terms become more familiar it is amazing what you can read and understand.
The biggest thing you have to keep in mind is generally the medical profession’s ability to interpret data - reading ‘normal’ off a sheet is NOT interpretation. It is ‘patient ping pong’. (See profile for explanation) 🤣
How robust is the original work that set the ranges they use in the first place? How often has this work been revisited with fresh eyes and with the latest knowledge?
I’m not sure when the Thyroid tests were devised, but for UTI’s, apparently they are still using tests devised in the 50’s!
These questions will not even enter a GPs head (too busy). In fairness not their job, but they will , not unreasonably, presume that is all being taken care of 😱 Oh if they only knew 🤣.
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