I don’t quite know where to begin, but i’ve found reading other similar posts on here very helpful and would really appreciate some advice.
I’m 23 years old, female and have type 1 diabetes (diagnosed age 3), an underactive thyroid (diagnosed age 16) and autoimmune hepatitis (AIH - diagnosed age 22). After being diagnosed with AIH I’ve really noticed my underactive thyroid making my life even more difficult than before.
I’m currently taking 150mcg of levothyroxine (actavis), since 2019 GPs have changed my dose on more than one occasion from either 100mcg to 150mcg. I also take 3mg corticosteroids and 60/75mg azathioprine for the AIH. As well as using an insulin pump etc for my diabetes.
I’m really struggling with shortness of breath, feeling very weak and fatigued, tingling/crawling in my feet, muscle and joint aches, cold hands/feet...the list goes on.
I have a very healthy diet, minimal processed foods and have been looking into some kind of elimination diet as I am in need of help but also don’t want to become deficient in other vitamins etc. I used to be quite active and liked doing Pilates, however I struggle walking up the stairs or even going for a walk now.
I have a long list of blood test results that will be helpful but how would you like me to post them? I can type them out in date order, or group them into what is being tested.
Please let me know how you’d find it most helpful to view my results and I will post them. Thankyou for reading💛
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If you have been reading posts, you will realise some of these symptoms could be low vitamins
Have you had vitamins tested
Breathlessness often low iron
Pins and needles low B12
Joint pain low vitamin D
What vitamin supplements are you currently taking
Activis has recently changed name to Accord. A few members are convinced that the tablets have also changed, though the ingredients listed remain the same
Steroids make TSH even more unreliable that normal
Essential to test TSH, Ft4 and Ft3
Presumably you have autoimmune thyroid disease also called Hashimoto’s
Please add latest results and ranges if you have them
That is interesting to know about the change in brand name. I have found previously that different brands have made a difference to how I feel. So I’ll keep an eye on the ingredient list.
Also I did not know that about the steroids and TSH values. So thankyou.
My latest blood test on the 6th January 2021 showed:
B12: 246 (144-915)
but was previously 149 on the 19th November 2020. GP tested for intrinsic factor antibodies and came back equivocal so was repeated and came back negative.
Serum folate: 9.2 (3.1-19.9)
Serum ferritin: 30 (11-306.8)
Vitamin D3: 83.8 (having only just finished prescribed course of vitamin d ampoules after result of 42 on the 19th November 2020) have now bought a vitamin d spray to use with k2 in?
I have struggled with my ferritin since as far back as 2018. In September 2018 it was 10 (10-210). This was not then checked again until a year later when I was suffering with awful headaches. After numerous appointments a blood test then showed abnormally high liver enzymes. After a liver biopsy I was diagnosed with the AIH. My T4 was then 11.5 (7-16) and my TSH was 2.7 (0.38-5.33).
On the 14th may 2020 my thyroid was checked..
T4: 10.6 (7-16)
TSH: 38.5 (0.38-5.33)
So my thyroxine was increased from 100mcg to 150mcg.
Latest thyroid test: 1st December 2020
T4: 12.8 (7-16)
TSH: 0.637 (0.38-5.33)
My transferrin was checked on the 10th October 2019. Results showed:
Serum iron: 6.9 (10.7-32.2)
Transferrin: 4.4 (2.2-3.6)
Transferrin saturation: 6% (20-50%)
Serum ferritin: 10 (10-210)
B12: 532 (150-900)
WBC: 8.3 (3.7-11.1)
RBC: 5.6 (3.8-4.9)
Haem conc. 128 (110-150)
Mean cell vol. 73.2 (80-101)
Mean cell haem. 22.9 (27-32)
Mean cell haem. Conc. 312 (290-360)
Platelet count: 247 (150-450)
I have been taking prescribed iron tablets since then. One a day. Last week I ran out and asked for a new prescription from my GP but they said my iron levels are normal, but allowed me to continue with one a day as I said I have been doing this for a while.
Because of this i requested an iron panel test from thriva:
TIBC: 54 (41-77)
UIBC: 45.2 (24.2-70.1)
Ferritin: 46 (44-150)
Iron: 8.7 (5.8-34.5)
Transferrin saturation: 16% (20-50)
I feel like I’m getting very little, if any support from my GP and so I really appreciate this app and your advice. I’ve had to ask for most of these blood tests to be done and I wouldn’t have known what to ask for without reading your other replies to posts. So thankyou again.
My daughter now aged 33 (I'm going to call her K because DD just makes me cringe)- type 1 diabetes age 10, hypothyroid age 30 - ultrasound 2yrs ago showed fatty liver and enlarged spleen.......so, thank you for posting, - AIH is something K needs to be aware of. I recognise all of your symptoms. My daughter has also had problems in particular with low Iron & Vitamin D levels.
During K's 14th year she ended up in hospital at the same time every month 8 months in a row with DKA, or very close to. Her blood sugars would just start rising and she'd spend the next day or so gradually pumping 3 times her usual doses in, and still they wouldn't budge. We thought it must be something hormonal and begged the Consultant to do some sort of testing - but he was adamant that wasn't the problem and refused. This still happens to a lesser degree today. Some 10 years later she saw him in clinic and he apologised. The upshot of this story is that a lot of insulin can cause PCOS - I hope that they make you aware of this now.
I think that the advice on this forum re optimising Vitamins/Minerals is invaluable/crucial, and that you will be much better for it.
Thankyou for your reply nellie237. I also agree that it would be very helpful if when someone is diagnosed with an autoimmune disease that the possibility of others is discussed. So that we can then be on the lookout for symptoms etc.
Before my diagnosis of AIH, I felt quite unwell and yet numerous doctors told me different things....to take amitriptyline for the headaches, to listen to classical music to de-stress (despite me protesting this being the case) and also to take antibiotics for a sinus infection....of course none of these helped but only made the problem worse sadly.
I am sorry for both you and your daughters experiences. I can really empathise with how you must’ve felt and still feel. My mum found this forum and told me about it. It has been exactly as you said, invaluable. I couldn’t agree more. I now feel like there is hope for me to feel better and go back to work/studying eventually.
My transferrin was checked on the 10th October 2019. Results showed:
Serum iron: 6.9 (10.7-32.2)
Transferrin: 4.4 (2.2-3.6)
Transferrin saturation: 6% (20-50%)
Serum ferritin: 10 (10-210)
B12: 532 (150-900)
WBC: 8.3 (3.7-11.1)
RBC: 5.6 (3.8-4.9)
Haem conc. 128 (110-150)
Mean cell vol. 73.2 (80-101)
Mean cell haem. 22.9 (27-32)
Mean cell haem. Conc. 312 (290-360)
Platelet count: 247 (150-450)
I have been taking prescribed iron tablets since then. One a day. Last week I ran out and asked for a new prescription from my GP but they said my iron levels are normal, but allowed me to continue with one a day as I said I have been doing this for a while.
Because of this i requested an iron panel test from thriva:
TIBC: 54 (41-77)
UIBC: 45.2 (24.2-70.1)
Ferritin: 46 (44-150)
Iron: 8.7 (5.8-34.5)
Transferrin saturation: 16% (20-50)
What date was Thriva test done?
I will flag these iron and ferritin results up for humanbean or SeasideSusie to comment on.
Clearly ferritin and iron remain very poor
Are you vegetarian or vegan?
Low iron and/or low ferritin frequently linked to hair loss
Look at increasing iron rich foods in diet
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
With B12 result below 500, recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
Vitamin D3: 83.8 (having only just finished prescribed course of vitamin d ampoules after result of 42 on the 19th November 2020) have now bought a vitamin d spray to use with k2 in?
Good that you are aware you will need to supplement vitamin D to maintain optimal vitamin levels
Looking at keeping at least around 80nmol and around 100nmol maybe better
Vitamin K2 will help direct extra calcium into bones
Look at also supplementing magnesium
When supplementing vitamin D
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
I would recommend you work on improving all four vitamins
ESSENTIAL to test TSH, Ft4 and Ft3 (plus thyroid antibodies if never been tested )
Look through previous test results to see if thyroid antibodies have been tested
Type one diabetes is autoimmune, so it’s virtually guaranteed your hypothyroidism is autoimmune thyroid disease.
About 90% of primary hypothyroidism is autoimmune thyroid
I would suspect you have poor conversion of Ft4 to Ft3
Poor conversion of Ft4 to Ft3 results in low vitamin levels and low vitamin levels result in poor conversion
It becomes a vicious circle
Vitamins need testing once year minimum
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).
Only add one supplement at a time and then wait at least 10 days to assess before adding another
Similarly only change diet when not changing anything else, otherwise it’s difficult to assess what’s helpful
Strictly gluten free diet often helps or is absolutely essential with autoimmune thyroid disease
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.
My thriva test was done on the 2nd February 2021. So only recently. I’m not a vegetarian. I eat iron rich foods but I will concentrate on increasing the amount and frequency.
My hair has never been the same since I was diagnosed with the underactive thyroid. It’s so much thinner now. And the azathioprine also caused more hair loss for a period of time, which I found quite distressing too.
When my b12 came back as 149 (150-900) in November last year, the GP asked me to come back and repeat the blood test as she said that the results can be unreliable..🤔 so I then had it re tested on the 1st December and it came back as 190 (144-915). The GP then said that this result was in normal range and not low, despite me complaining of symptoms as well.
I will post onto the forum you attached about pernicious anaemia with my experience. But in the mean time I will start taking some b12 supplements.
I will also look into getting my antibodies checked using the links you’ve attached. As I believe they have never been checked before. A locum GP requested them to be tested last year but further along the line they were declined by somebody else.
I am not currently strict gluten free, so following your advice I will try this once I have added in vitamin supplements successfully. I had recently requested a celiac test and the results came back as negative. However, I do have a low gluten diet, I avoid bread and cereal etc.
I am going to continue reading through all the links you have attached. Thankyou ever so much. You have given me back the hope I had lost. And the confidence back that I am right to listen to my body and know that I am not making a fuss, which is how I’ve been made to feel previously. Hopefully I will be able to start living properly again sometime soon! Thankyou again💛
.....And the confidence back that I am right to listen to my body and know that I am not making a fuss, which is how I’ve been made to feel previously.....
As a mum to someone your age , and as someone who only has hypothyroidism to deal with, and didn't get that till i was 30 ish..... i assure you , at your age , with those 3 things to manage ....you are not making a fuss... and if anybody makes you fell like you are , send em to see me , and i'll set my daughter on em ... she has an impressively sharp tongue.
So glad you've found your way here, and hope it really helps to be able to be in touch with others in the same boat.
And here's hoping your boat starts to sail into better waters soon.
You might find my profile info helpful. I had zero idea I was gluten intolerant.
Essential to maintain OPTIMAL vitamin levels
Assuming you have poor conversion of Ft4 to Ft3 you may need addition of small doses of T3 prescribed alongside levothyroxine....but we need all other ducks in row first
I’ve read your profile and have found it inspirational.
Im going to focus on the b12, b complex and vitamin d supplement first. And iron. But eventually want to try a magnesium supplement like you said. Have you tried the magnesium glycinate capsules? Would you recommend them?
I have been taking prescribed iron tablets since then. One a day. Last week I ran out and asked for a new prescription from my GP but they said my iron levels are normal,
Do you have those results?
Because of this i requested an iron panel test from thriva:
Serum iron: 55 to 70% of the range, higher end for men - yours is 10.10% through range so it's very low.
Saturation: optimal is 35 to 45%, higher end for men - yours is 16% so it's very low.
Total Iron Binding Capacity (TIBC) or Transferrin: Low in range indicates lack of capacity for additional iron, High in range indicates body's need for supplemental iron - yours is 36.11% through range so not dire but less than half way.
Ferritin: Low level virtually always indicates need for iron supplementation
Ferritin: 46 (44-150)
You've given the wrong range for this. Thriva's ranges are confusing when looking at the coloured bar graphs. You have to include the whole of the green bar - light green and dark green. The actual range is 13-150. You can see the actual ranges if you download the pdf sheet of your results rather than look at the graphic.
Your result is 24.09% through range. This is considered low.
UIBC: 45.2 (24.2-70.1) - This test measures how much Transferrin is not attached to iron but I don't have an optimal level for this.
You have been allowed to keep your prescription for iron tablets, albeit one a day. I don't know if this will be enough, it may take a long time to improve your levels with just that dose; however, if you incorporate liver into your diet (or liver pate) this should help. No more than 200g of liver per week due to it's high Vit A content.
My GP has only tested my ferritin level and full blood count recently, in regards to the iron etc. My transferrin etc was last checked by the GP back in October 2019. When my levels were extremely low. And iron tablets were prescribed by a different GP. They have not been checked since.
After the discussion with the GP about my iron tablets potentially being stopped/continued, I decided to order the thriva iron test to check what was going on. I took this test on the 2nd February 2021.
My past ferritin levels checked by the GP have been:
6/1/21 - 30 (11-306.8)
14/5/20 - 18 (10-210)
10/10/19 - 10 (10-210)
5/9/19 - 10 (10-210)
Thankyou for explaining these ranges and what they mean in regards to my results. It makes me feel so much more supported in trying to get better. Rather than feeling like there is no hope.
Do you think I should try to request more iron tablets from the GP? Or perhaps tell them about my thriva results?
I will start eating liver as you have advised, my mum has cooked it for me maybe 3 times in the last few months to try and help my levels. So I’m happy to have it more often if it will make me feel better.
I don't suppose it would hurt to discuss your Thriva results, if your GP is open to private tests, not all are.
It might be worth increasing the dose of iron tablets, maybe two a day and see how that goes, but it's important to test regularly to monitor your levels.
Do you take our iron with Vit C? This aids it's absorption.
Remember to keep your iron tablets 4 hours away from your thyroid meds and 2 hours away from any other medication and supplements as iron affects their absorption.
I’ll continue with the one iron tablet a day, as well as the liver once a week and then arrange another blood test soon to check my levels and then go from there.
When my sugar levels allow me to I’ll have it with a small glass of orange juice and some food not containing dairy. I find that I get tummy ache if I don’t eat with the iron tablet. If my sugar levels are a bit high then I may have it with a berocca instead of the orange juice, is that ok?
I take my Levo first thing, around 7am. Then steroid at around 9am with breakfast. Then b12 and b complex at 10am with snack. Then lunch. Then iron with snack at 2pm. Then dinner with azathioprine at 6. I’m definitely going to have to set regular alarms😅
A general comment to take note of-if you need to supplement it’s often for life. If you stop-over time levels can drop again so best to get levels up then try to find a maintenance dose to keep them there. Good that you are looking at levels of vitamins etc as well. You queried the K2, that is a co factor of Vit D along with magnesium so have a look at a VIT D group and that will explain it but basically VIT D also increases calcium and too much calcium in your blood isn’t good for you so check that out, K2 sends excess calcium to your bones and teeth.
Thankyou for your reply silverfox7. I will make sure I find and stick to a routine of taking the supplements. Whilst I’ve been feeling unwell it all seems very overwhelming on top of managing everything else medical. So I appreciate the support.
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