Hi all - I’m new to this group and looking for some advice. Sorry in advance for the long post!
I was diagnosed with hypothyroidism and diabetes (2) in 2014. I was put on meds for both conditions without any proper guidance or support from my GP practice. I did a lot of research myself and both conditions very well for the last 10 years. Each year I have a review with a blood test and a nurse appointment. I’ve been told at each review that my thyroid and sugar levels were within acceptable limits. I lost a lot of weight following my diabetes diagnosis and my blood sugars have been kept very low over the 10 years.
I had a very stressful year last year and retired a few months ago. Just before Xmas I developed an itchy rash which was moving to my arms, legs and chest. I’ve never had rashes before. I went to the GP a few times - I was given steroid creams and anti-histamines but it had no effect. I was then put on high dose steroids for a month - the rash came back when I finished the steroids. The GP assured me the rash wasn’t connected to my hypothyroidism or diabetes. I asked to be referred to a dermatologist. I was diagnosed with chronic spontaneous urticaria (CSU) and put on 4 anti histamines a day, which completely knocked me out. The dermatologist told me that research showed that there was a link between CSU and iron and vitamin D deficiency. I was astounded to find that the annual blood tests I’ve had for 10 years don’t test for iron or vit D. My vit D levels were found to be deficient- my iron was borderline. I went back to the GP and was prescribed high dose vit D. I opted to take iron supplements. I also found out from thyroid forums that rashes and vitamin/iron deficiency was a common side effect of hypothyroidism
I went back to my GP and questioned them about feeling that my hypothyroidism is treated as a tick box exercise and saying that I’d never received full details of my diagnosis. Only at this point - 10 years after my diagnosis - was I told that I have a positive thyroid autoantibody. I’m not sure that myT3 levels are ever tested. I asked for a referral to an endocrinologist but was told that they would write for advice and guidance. The request to the specialist failed to mention the rash I’ve had for 6 months! I went back to the GP and again asked for a referral but it appears that they’ve again requested advice and guidance.
I’m at a loss as to what to do next. I can’t afford to see an endocrinologist privately. I would be grateful for any suggestions of how I should proceed with this.
Thank you!
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Oatlove
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sorry I forgot to mention that I asked for further tests to check my level of iron and vitamin D. My vitamin D level is now okay following the supplements. However, my iron levels have dropped by a third despite the fact that I’m taking a supplement. My doctor has asked me to make a non-urgent appointment to discuss the results!
If your iron is dropping it is, basically, because you are losing it faster than you are gaining it.
It could be that the reason you are losing iron needs to be addressed. That is important. But it could be that, despite taking a supplement, you are not adequately absorbing it. Or the dose and/or frequency are not high enough.
helvella - Iron Document
This is a summary of what I have read up and found out about iron supplements over the past few years. I am not in any way medically trained. You are strongly encouraged to check every detail before making any decisions for yourself.
Well, that sounds about standard thyroid treatment. Doctors know nothing about thyroid because they don't reall 'do it' in med school. And endos are often even worse! So, you're probably not missing much by not seeing one. Yes, I know they're supposed to be the experts, but they aren't. Most of them are diabetes specialists with no special training in thyroid, just a few weird ideas. And they often make things worse rather than better. So, we're pretty much on our own with this. Which is why so many thyroid forums exist.
So, the first thing you should do now is see the surgery receptionist and request print-outs of your thyroid blood test results and range for as far back as possible - back to diagnosis, if you can. You need to know exactly what was tested and exactly what the results were, and learn to understand them. We can help you with that if you post them here.
The link between low iron and thyroid is that hypos usually have low stomach acid, due to low T3. This means that you have difficulty digesting food and absorbing nutrients. Doctors don't know that and a lot of them refuse to believe that there even is such a thing as low stomach acid. They can be a bit obtuse at times.
Never believe a doctor when he tells you that your symptoms are 'nothing to do with your thyroid'. For a start, they really haven't got a clue what symptoms are. And secondly hypo symptoms can occur anywhere and everywhere in/on your body and brain. Every single cell in your body needs T3 to function correctly, so if there's not enough to go round, there's no limit to the things that can go wrong.
I was astounded to find that the annual blood tests I’ve had for 10 years don’t test for iron or vit D. My vit D levels were found to be deficient- my iron was borderline. I went back to the GP and was prescribed high dose vit D. I opted to take iron supplements.
My vitamin D level is now okay following the supplements
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)
20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis
In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function 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.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to 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 may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines
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.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
Thanks all, that’s such helpful info. It’s so tiring battling with mt GP about this. I’ve never before questioned the advice from my GP but this is all been quite shocking.
Like you I became diabetic and hypothyroid at the same time, but nearly 25 years ago, before this lovely online forum existed. The Gp surgery loved the initial diabetic diagnosis putting me on metformin, statins etc, but it was only recently did I find out they ignored the over range TSH results until they reached 10+ two or so years later, despite my struggles with Hashi symptoms. I have learnt my surgery does the yearly diabetic blood check ( ie HbA1c ) , does a tSH but does not discuss this, and certainly doesn’t do vitamin/ mineral monitoring even if asked. I do the full thyroid blood tests, by Medichcks 1-2 times a year, and now use Roseway Labs prescriber and supplier of T3. Ten years ago I got septic shock and acute pancreatitis following problems with a routine procedure to unblock a bile duct, and twice giving me ketoacidosis …I ended up as a type 3c diabetic…yet I have never seen an NHS endo for diabetes or thyroid problems such is the Trust’s/ surgery’s belief that these ailments can’t make you really ill. Good luck with your problems.
OMG this sounds painfully familiar. We have no ‘power’ over what our GPs tell endocrinologists about our cases. GPs seem to be very superficial in their review of patient notes. Recently I also found my present GP wanting to just give the endo the more usual hypo symptoms. I wanted my heart symptoms reported. I was ready for this when I finally saw the endo and, surprise surprise my heart issues were not mentioned in the GP letter. Luckily this endo at my request (and my background knowledge of him) was more than happy to discuss the heart symptoms (25 years standing). Whilst my hypo could have been diagnosed 25 years ago it was missed because of this superficiality of patient histories/doctor knowledge. Then finally on diagnosis, only three years since, incomplete history (I think again) and an endos utter lack of interest GP told to just titrate dose - from which I became very ill. It’s a complete mess, this system. Patients are not being heard, far less taken note of.
It’s everywhere in our NHS. Everyone wanting shortcuts just to get through the work. We are just numbers. It’s ridiculous how delicately we must massage these egos. However they are a big danger to us and our health outcomes.
Private is no better. The only way is educating ourselves and always seeking out support from as many sources as possible (most are right here).
Welcome! You have come to the right place. Most of us here have been let down by the medical professionals and know how you are feeling.
As suggested, get your results, you are legally entitled to them at no cost. Then come back with them and this brilliant forum can help further.
Have a good browse through the forum - so much information! But the more you learn about the thyroid, the better placed you are to help yourself. Sending a hug.
hi all - i’ve been feeling my blood test results for the last 4 years. I’ve only ever had tests for serum TSH levels - no measurement of my T3 or T4 levels. Should T3 and T4 be a standard test for NHS hypothyroid patients? Sorry, I’m new to this and I’ve never before questioned the treatment I’ve been getting from the GP.
I would be really grateful for any assistance with interpreting these results My T4 appears to be at the upper end of the normal range and my overall TSH level appears to be towards the lower end Could anybody please advise whether this is a cause for concern and/or if I should be altering my medication I’m currently on 125 Levothyroxine daily I’ve had low ferritin levels and a rash (chronic spontaneous urticaria) for 6 months so trying to work out the cause
As this post is now a few weeks old you will get more responses starting a new post with results.
Free T4 (fT4) 15.2 pmol/L (7.8 - 18) 72.5%
Free T3 (fT3) 4.69 pmol/L (3.5 - 6.8) 36.1%
You still have a little room to increase Levo, either by 12.5mcgs or 25mcgs. Ask GP for a trial increase which often goes down better.
Your conversion isn't good as FT3 needs to be around 70% and yours is only 36%. If you want to think about adding a small amount of T3 to your Levo then its recommended to get all key vitamins to OPTIMAL levels which helps you to tolerate and use the T3.
You can email info@thyroiduk.org for a list of T3 friendly Endo's, or make a post asking for recomendations giving the general area you live in. The post will be locked to prevent info being posted publicly and members cn send you a private message.
What are you taking for iron and are you sure to leave 4 hours between Levo & iron. Try taking iron with orange juice or anything containing vit C to help it absorb better.
If you havent yet had B12 & folate tested then go ahead and do that either with GP or privately.
Sorry Jaydee1507 can I also please ask how the percentages are worked out? Sorry if I’m being a bit stupid about this but until very recently I didn’t understand that T4 is converted to T3. I want to understand this before discussing with my GP otherwise I’ll just get fobbed off. Again
You can use this calculator to work out percentage through range of your blood results: thyroid.chingkerrs.online/
You're not being stupid at all. We all have to begin somewhere learning about our condition.
When your GP prescription for vit D runs out you will need to buy your own supply to continue to maintain your level. Most people need a minimum of 3,000iu per day.
Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Many members like the ‘Better You’ range of mouth sprays that contain both bit D & K2. Use this calculator to work out how much to take to get your level to 100-150.grassrootshealth.net/projec...
Thank you, that’s so very helpful. I’ll speak to GP asap. I do leave 6 hours between levothyroxine and iron supplement. I’ve been prescribed Ferrous fumarate 322mg tablets for 3 months. I’ll email for T3 friendly endos. Thanks again.
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Hello everyone, I am new to this forum so just an introduction here
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