I became unwell about 4 years ago when my periods stopped . I thought it was menopause at first, but then I began to experience distinctly non menopausal issues. These included joint pain, numbness and tingling in my fingers, brain fog and physical fatigue, sleep disruption, abdo pain, raynauds, tinnitus, occasional dizziness, and lightheadedness, constipation , headaches plus treatment refractory oral thrush, which has been my constant companion now for the past three years. I was also found to have low complement C3 and C 4, plus mild neutropenia, low iron and low ferritin . I have found that supplementation only resolves the iron deficiency for a short period before it returns. I experienced a rectal bleed in 2016 and was found to have colonic polyps and diverticulitis. A video capsule endoscopy early this year revealed biliary gastritis. My joint pain continued together with the other symptoms . Now my joint pain is worse, particularly in my feet and hands . A couple of ANA tests had been carrried out since 2016 with negative results, but last year and the year before that, ANA tests returned showing results of 1/40 and the most recent test, which was carried out a couple of months ago returned showing a result of 1/80 with RNP antibodies. My rheumatologist has diagnosed UCTD and osteoarthritis - During the past two years I have gained three stones - up from 8.5 stones to 11.5 stones. Most of that weight has been gained in the past year . I feel exhausted and no matter how little I eat, or how much I exercise I continue to gain weight. Although I used to be a runner, I now have exercise intolerance. I go to the gym daily but can’t do anything other than cross trainer and jogging and not for very long due to lack of energy. Endocrinology have refused to see me because my thyroid function is allegedly ‘normal’, however I have noticed that my Tsh which has always been 1.5 or thereabouts was 2.5 when it was recently tested . Given that I have UCTD, it seems likely that I may have some thyroid issues which should be treated. The weight gain, constipation etc etc also suggest this . Should I go private for help ???
Advice required - New to thyroid problems - Thyroid UK
Advice required - New to thyroid problems
You've mentioned a couple of conditions I know nothing about. (I have no medical training) :
UCTD - Undifferentiated Connective Tissue Disease
low complement C3 and C 4
Anything I say could turn out to be a bad idea because of the medical conditions you have, so please bear that in mind and check that anything that is suggested to you is okay in your situation.
...
I experienced a rectal bleed in 2016 and was found to have colonic polyps and diverticulitis.
I had a rectal bleed a long time ago, and one of the things that shocked me was that there was no testing or treatment after the cause was found and fixed to replace all the blood I'd lost (and I had lost a lot!)
I had to do my own iron testing privately, learn how to interpret the test results, and learn how to supplement my iron myself with the correct doses. It took a couple of years to get my ferritin (iron stores) level up to mid-range, and has taken several years since then to work out the dose of iron I need to take as a maintenance dose to stop myself ending up anaemic or low in iron all the time. My iron results were weird when I first started supplementing by myself, but over time (several years) they have become more and more normal. Although they aren't all optimal yet they are very close.
It sounds to me that you are in the same boat. You are probably never taking supplements for long enough to optimise your iron and/or ferritin, you are losing iron all the time because of the gut problems you have and so you are constantly in a state of iron deficiency or low iron.
An awful lot of your symptoms are almost certainly related to your low iron/ferritin.
During the past two years I have gained three stones - up from 8.5 stones to 11.5 stones. Most of that weight has been gained in the past year . I feel exhausted and no matter how little I eat, or how much I exercise I continue to gain weight.
You really need to read this link and watch the video :
healthunlocked.com/thyroidu...
I also wanted to say that, for the moment, you need to start eating an amount that is enough to keep a healthy adult stay healthy - absolutely no dieting. If you are bleeding or have been bleeding for years or are naturally unable to hang on to iron, or absorb it, then the chances are you are drastically short of all sorts of nutrients. The blood you are losing might not be visible, and many polyps only bleed intermittently - so you might be losing blood without being aware of it.
Semi-starvation in an attempt to lose weight is simply not going to work. People who are living through a famine don't recover from any ill-health they have, they just get worse. And for anyone with a thyroid condition, semi-starvation is a very big no-no because it reduces the amount of thyroid hormones the body can produce.
Another thing you need to do is to stop trying to exercise. One of the thyroid hormones that people have is called T3. If you have poor levels of T3 this is another reason why you will never get well - and exercise will reduce the T3 you are producing. If you want to exercise then go for a walk, an amble rather than a route march, do some gentle yoga, or do some gentle swimming.
If you love exercise then just tell yourself that you'll enjoy it more when you are healthy enough to get some benefit from it.
...
You need to find out how bad your iron and ferritin levels are. The best private test of iron levels is a finger-prick test which doesn't require the services of a doctor. This one :
medichecks.com/iron-tests/i...
You can get 10% off using the discount code in this link - it's old but I think it is still valid :
healthunlocked.com/thyroidu...
If you are currently taking any supplement containing biotin then stop taking the supplement for a week before testing. If you are taking any supplement containing iron then stop taking that for a week too. Do the necessary finger-pricking before breakfast and before any drink except water, first thing in the morning.
For any private testing that has to be sent to a lab through the post, you have to consider when your blood will reach the lab - you want it to arrive as quickly as possible and while it is as fresh as possible, and you don't want it to arrive at the very end of the week or at the weekend.
Sadly the option to get guaranteed delivery by the next day has been "improved" by Royal Mail recently, and in the process has made it much, much less useful. But still it is worth using.
royalmail.com/sending/uk/sp...
For items posted from Monday 28 September 2020 onwards, our guaranteed delivery for Special Delivery Guaranteed by 9.00am the next working day will change to by 11.00am the next working day*
• Our guaranteed delivery for Special Delivery Guaranteed by 1.00pm the next working day will change to by 4.00pm the next working day*.
There is a huge difference in price between the above two options. The 4pm option is much, much cheaper than the other option and is the one I would go for.
...
Once you have the results of your iron testing, post the results and ranges in a new post on here and ask for feedback.
Please be aware that prescription-strength iron supplements can be bought without prescription in the UK. If you go to a pharmacy and ask for what you want you only need a pharmacist's permission to buy them. I've only been turned down once (by a branch of Boots). I just went to a different chain or independent pharmacy and got the iron supplements I wanted there. We can tell you what to ask for.
Good luck, and welcome to the forum.
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 if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
About 90% of primary hypothyroidism is autoimmune thyroid disease
Ask GP to test vitamin levels and thyroid antibodies
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 .
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
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus vitamins including folate (private blood draw required)
medichecks.com/products/thy...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
monitormyhealth.org.uk/thyr...
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
List of hypothyroid symptoms
thyroiduk.org/signs-symptom...
Come back with new post once you get results for advice on next steps
Meanwhile
Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private
tukadmin@thyroiduk.org
Hi SlowDragon
Many thanks for your very helpful response. I am low in Vitamin D and my GP has prescribed this supplement. I'm in Scotland and labs here won't test T3 unless TSH and T4 are 'abnormal' i.e. outside the accepted ranges (despite the ongoing debate surrounding the issue of accepted ranges). Accordingly, I feel that I am between a rock and a hard place. I have an appt next week with my GP and intend to suggest that she commence me on a trial of Levothyroxine - I cannot see that this can do any harm if properly monitored. However, I am not at all confident that she will agree, despite my many symptoms, proven abnormal test results and the fact that I continue to gain weight. My experience of NHS practitioners is that they adhere rigidly to NICE or SIGN guidelines to justify decisions not to provide treatment, despite the fact that the guidelines for many conditions are blatantly wrong and completely out of step with current knowledge and thinking. On the basis of this and in the interests of being proactive, I am considering my options if the GP refuses to give me a trial of levothyroxine. I wish to find an endocrinologist who will be prepared to think out of the box and not use outdated guidelines to justify a decision not to take any action to help. I will certainly make contact with the person you refer to, to obtain a list of endocrinologist, but it would be even better if you knew personally of an endocrinologist who is prepared to have an open mind and divert from guidelines on a case by case basis. I have carried out a lot of research and note that many patients see endocrinologists privately to obtain the care denied to them on the NHS, but have no success, because many endocrinologists put themselves forward as being prepared to do more for private patients, when in fact they have no intention of doing any such thing, using the guidelines to justify their substandard care. This is dishonest, but it seems to happen very frequently. It is quite bad enough to be lectured about guidelines by pompous fools when I am not paying for it directly, but I draw the line at paying for this type of 'treatment'.
How low was vitamin D and how much have you been prescribed
GP will often only prescribe to bring levels to 50nmol.
Some areas will prescribe to bring levels to 75nmol
leedsformulary.nhs.uk/docs/...
GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)
mm.wirral.nhs.uk/document_u...
NHS Guidelines on dose vitamin D required
ouh.nhs.uk/osteoporosis/use...
But improving to around 80nmol or 100nmol by self supplementing may be better
ncbi.nlm.nih.gov/pubmed/218...
vitamindsociety.org/pdf/Vit...
Once you Improve level, you may need on going maintenance dose to keep it there.
Test twice yearly via vitamindtest.org.uk
Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7
It’s trial and error what dose we need
Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol
grassrootshealth.net/projec...
Government recommends everyone supplement October to April
gov.uk/government/news/phe-...
Taking too much vitamin D is not a good idea
chriskresser.com/vitamin-d-...
With your Vit D, important cofactors - magnesium and Vit K2-MK7
Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine
betterbones.com/bone-nutrit...
medicalnewstoday.com/articl...
livescience.com/61866-magne...
sciencedaily.com/releases/2...
Vitamin K2 mk7
betterbones.com/bone-nutrit...
healthline.com/nutrition/vi...
Recommend getting FULL thyroid and vitamin testing 6-8 weeks after getting vitamin D to optimal level
Essential to test BOTH thyroid antibodies and to do test as early as possible in morning
Important to regularly retest vitamins
ncbi.nlm.nih.gov/pubmed/286...
Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.
endocrine-abstracts.org/ea/...
Evidence of a link between increased level of antithyroid antibodies in hypothyroid patients with HT and 25OHD3 deficiency may suggest that this group is particularly prone to the vitamin D deficiency and can benefit from its alignment.
Hi SlowDragon
I've just looked at my blood test results and see that I have only two vitamin D results, one dating from 2017 and one from 15 months ago. The one from 2017 was 56 and the one from 15 months ago was 76. It's been tested since, but I don't have the result, however, I think it was probably low because my GP gave me a prescription for vitamin D a couple of weeks ago without really explaining why she was doing this. The usual story!!
How much vitamin D has GP prescribed?
Make sure to retest levels in 3-4 months
She has prescribed 1000 iu per day.
What was vitamin D result
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Link re access
healthunlocked.com/thyroidu...
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
there’s a lot to reply to here but I had much the same in the way of results and diagnosis although it doesn’t explain the anemia and fatigue and weight gain
I don’t feel like uctd is a very good diagnosis as it seems quite weak/vague to me and I don’t know whether to take the hydroxychloroquine now or not as my must recent Ana test was negative but was positive before. are you taking that?
And are you taking anything for your thyroid? .
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