I am 26yr old female and have been suffering from under active thyroid since the age of 13-14 yrs old and have been taking levothyroxine ever since.
My symptoms had been up and down all the time and my medication had been adjusted and is now at 150mg of Levo.
About 5-6 months ago I started noticing hair loss, and now it has all completely fallen out!
I have been to my doctor (new one, since I moved here) and they have been very unsympathetic or helpful! He has said I have alopecia and just left it at that.
On further research I noticed this could be related to my thyroid and auto immune diseases. I looked into NDT and raised this with the doctor - which was felt with much resistance. Now I have taken a medi checks blood test and would like to share my results with the group hopefully you guys are able to help me?
This is stressing me out and has made me feel depressed and anxious all the time, I am tired and have lack of energy, still feel cold and all the usual symptoms even though my latest result has come back as levo dose is correct?! I am also really worried about my hair loss.
The results report below:
Your thyroid stimulating hormone is in the lower half of the normal range indicating that your levothyroxine dose is correct.
You have normal levels of thyroxine and free T3.
Your FT3/rT3 ratio is low which could suggest that you are not getting sufficient free triiodothyronine (FT3) into your cells. Other conditions can cause difficulties converting thyroxine to T3 and cause rT3 to rise. These include COPD, liver disease, diabetes, heart failure and low calorie diets. If you are experiencing difficulties with any of these then I suggest you discuss this further with your GP.
There is currently little scientific research into the FT3/rT3 ratio, but some experts believe that this could lead to symptoms of hypothyroidism (slow metabolism) even though your thyroid hormones are at normal levels.
You may wish to discuss these results with your GP although you should note that it may be difficult to get advice and treatment for elevated rT3 or an abnormal ratio through conventional channels.
Your antibody levels are within normal limits and so an autoimmune condition of the thyroid is not detected.
Your levels of vitamin B12 and folate are normal.
Your vitamin D levels show that you have vitamin D deficiency.
Low levels of vitamin D can cause fatigue, bodily aches, poor memory and difficulties concentrating.
Outside of the winter months there is enough sun for your skin to make at least part of your daily requirement of vitamin D, so it is worth trying to get 15-20 minutes of midday sun when the sun is out. Vitamin D can also be found in fortified foods such as breakfast cereals, tofu and some fruit juices. The only reliable natural source of vitamin D is in oily fish, although it can also be found in some mushrooms (portobello, maitake, morel, button, and shiitake are particularly good), you can improve this by leaving the mushrooms in the sun before cooking them.
We recommend supplementing with 80 mcg (3200 iu) of vitamin D per day for twelve weeks. It is important to test your vitamin D levels regularly - many people in the UK are insufficient or deficient in this vital vitamin. If you are already taking vitamin D then I recommend that you increase your dose. We suggest that you repeat your vitamin D test in 8 -12 weeks to ensure that your levels have returned to normal.
Once your levels have returned to normal then you can decrease your vitamin D supplementation to 10 mcg (400 iu) per day.
Your CRP level is high. This may indicate increased inflammation and/or infection within the body. If you are experiencing pain, fever or other symptoms that suggest infection or inflammation then I recommend that you discuss this further with your GP.
The type of CRP test that you have had is one which can also indicate future risk of cardiovascular disease. I recommend repeating this test in 6-8 weeks to see whether it remains above 3. If it does then I recommend that you take a more aggressive approach to managing other cardiovascular risk factors such as blood pressure, cholesterol, diet, smoking and exercise levels.
Your ferritin level is normal indicating healthy iron stores.
Actual results uploaded on photo! Any help or guidance much appreciated
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tammyc
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I'm so sorry to hear that you've lost all your hair, it must be very stressful.
You are extremely Vit D deficient and you will feel awful and need to start taking supplements asap minimally at the dose suggested. Your doc might just palm you off with a lower level but don't accept it and show them NICE guidelines ect.
Your iron, folate and B12 could do with being higher too to be optimal for your thyroid.
In regards to your CRP - this is showing you have inflammation - this could be down to illness or infection if you've been ill recently with flu etc but would normally be higher in these incidences. You thyroid antibodies are low so unlikely to do with your thyroid. Have you ever had these tested before - have you been told your thyroid is autoimmune?
I would ignore the reverse T3 to be honest - it's more a problem if over range. Doesn't look like you need to increase your thyroid meds although conversion into T3 could be better - some people need to take T3 as well but it could be being caused by other things like deficiencies.
Whats your diet like? Do you eat enough, is it varied enough and healthy?
Edit - apologies, I read the result for RT3 wrong and thought it was the one under range but it is higher range so does seem like you're not converting efficiently. How long was it before the blood test that you took your last dose of thyroid meds?
Did your doc not do any blood tests when you lost your hair? You mentioned auto immune diseases - do you have other problems apart from thyroid. What other symptoms do you have?
I don’t have any confirmed auto immune disease apart from alopecia - the doc did not do any blood tests here but my previous doctor did do a test. I had been stable on 125mg for some time and they increased my levo to 150mg after that test
They increased after the test results above? If so, I think you would now be over medicated/ hyper which can cause similar symptoms to being hypo. How long ago was that?
Or do you mean that's your results after the increase to 150?
Sorry forgot to mention, you could probably do with an anti-inflammatory diet - gluten and sugar are the most inflammatory foods but I would work on making sure you're getting everything you need first before taking more things out maybe. Finding any foods you are intolerant to would also be useful
Thanks saggyuk, I have arranged appointment with doctor to go in and request the vit D. How much iron, folate and b12 should I get can I get this from a diet or supplement? Bit worried about the CRP as I wasn’t suffering from flu or infection when I took the test! But will see what doc says and retest as advised!
I haven’t been told my thyroid is autoimmune! Is this something that can be gathered from results?
Been reading about t3 and just assumed maybe something I should take? Would you say this s not the case
My diet and exercise could be better. Normally 2 meals a day skipping breakfast pasta/jacket for lunch and small portion of rice with curry for dinner sometimes have takeout and very occasionally when I’m out I’ll have desert. I have lot of coffee too which I assume is bad? And was thinking of trying paleo diet?
The results have prompted me to get back to gym and sort diet out but want to get it right
I wouldn't advise going back to gym until feeling better to be honest as will decrease your T3 levels further. Do some walking or something less aggressive like yoga or even swimming instead.
Yes I think diet needs to be looked at very carefully as doesn't seem varied enough if this is what you're eating daily so likely low on a lot of micro nutrients and essential stuff. Are you eating vegetables - milk and fish etc? If you have the money, you could always pay for tests but it would be expensive. If you can persuade the docs to do bone profile, liver and kidney function tests - might be helpful to see some further areas but won't test everything. You can use a site like cronometer and plug in everything you eat over a week and see what it shows up if you can't afford testing. It can show up massive holes in diet if used properly.
If you drink a lot of coffee, you will feel terrible going cold turkey so I would just switch every other cup for decaff and then reduce further from there.
I don't necessarily think you need T3 as likely other issues causing conversion issues. You would need to retest after sorting some of the issues out and see where you're at then.
If you have thyroid antibodies, you would be autoimmune which means your own body is attacking your thyroid. You don't in this test but antibodies do go up and down so doesn't 100% mean you're not autoimmune. Maybe retest at a later date.
There are other things thyroids need such as iodine and selenium that you need to get from your food. Iodine deficiency is the largest cause of thyroid failure worldwide so it's very important to get your diet right.
In regards to the inflammation, do you have any stomach issues or skin complaints etc?
In response inflammation I do have itchy skin and stomach pains occasionally after food . I have developed acne spots top of my arms - what does this mean? Is it related? Thanks
Hi Saggy just read your edit about the RT3 - response is that I took the blood test in the morning and had not taken my Levo before going to it. The last dose would’ve been at least 24 hrs before. In regards to comments of cardiovascular risks I forgot to mention I don’t actually smoke or drink alcohol. I am just collating all the specific advice I’ve been given so I can into the GP with the right questions etc and take diet recommendations
Hiya Tammy just so you're aware you should always leave it 24 hours but never more as it can skew the results as your levels will start dropping too much
Tammy, it's so puzzling when your numbers look good and you still have symptoms. I have the same problem. However, your Vit. D is definitely deficient so getting that sorted will probably help to some extent. If you are able to get a blood reading on your zinc levels to see if supplementing with Zinc is a possibility, for me it helped with hair loss.
Hi, I sympathise. I recently say a trichologist as I am concerned with my hairloss. One thing he mentioned about one of my blood tests that had elevated CRP was that this affects ferritin and it is in fact about half of the reported result whenever CRP is elevated. Which means you are in effect deficient. He also said that for optimal growth, ferritin should be over 100.
So it looks like you are very low on vitamin D and iron. Maybe you should be tested for anemia, and you should try to raise your levels. I'm taking ferrous fumarate 210mcg twice per day with vitamin c and that has helped me go from 36 to about 70 in 3 months or so. When taking vitamin D, it should be with Vit K2-MK7. Hopefully someone more knowledgeable will be able to say how much of that you should take.
Your thyroid antibodies, although below the limits, aren't exactly low, especially your TPO. As antibodies fluctuate, and one negative doesn't rule out autoimmune thyroiditis (aka Hashimoto's), I wouldn't be surprised if retested that they were over range and confirm Hashimoto's. This could be why your symptoms have been up and down and your dose adjusted. It would be a good idea to adopt a strict gluten free diet and supplementing with selenium L-selenomethionine 200mcg daily to help reduce antibodies.
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You really need to see your GP about some of your nutrient levels.
Medichecks suggestion of 3200iu Vit D daily for 13 weeks is, quite frankly, ludicrous. Your level of 12.8nmol/L is SEVERELY DEFICIENT and you need loading doses as suggested by NICE Clinical Knowledge Summary cks.nice.org.uk/vitamin-d-d...
Don't accept a prescription for 800iu, it must be the loading doses totalling 300,000iu over several weeks. You will then need a decent maintenance dose, which could be 2000iu daily, it's trial and error so we need to retest D3 twice a year when supplementing so that we stay within the Vit D Council recommended range of 100-150nmol/L.
Although your GP won't know (because they're not taught nutrition) there are important cofactors needed when taking D3 vitamindcouncil.org/about-v... Magnesium helps D3 to work and K2-MK7 directs the extra uptake of calcium from food to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as calcification of arteries and kidney stones.
Take D3 4 hours away from thyroid meds and as it is fat soluble it should be taken with the fattiest meal of the day. Magnesium is calming and best taken in the evening, 4 hours away from thyroid meds.
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Your folate level is very low, it should be at least half way through it's range. A good B Complex containing 400mcg methylfolate will help there, have a look at Thorne Basic B.
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Ferritin is also low and needs to be at least 70 for thyroid hormone to work. You can raise ferrritin by eating liver regularly, maximum 200g per week. You could ask your GP to do a full blood count and iron panel to see if you have anaemia, and he may prescribe iron tablets. If so take each one with 1000mg Vit C to aid absorption and help prevent constipation. Take iron 4 hours away from thyroid meds and 2 hours away from any other medication and supplements as it affects their absorption.
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Your high FT4 and low FT3 suggest poor conversion and the need for adding T3 to your Levo. You would need a referral to an endo for that and at the moment it isn't easy for new patients to be prescribed T3. But at least you have the Medichecks Doctor's comments to back that up.
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"Other conditions can cause difficulties converting thyroxine to T3 and cause rT3 to rise. These include COPD, …......."
That is very interesting. I have poor conversion and I had high in range RT3 when tested, and I have COPD. I never knew there could be a link!
Just had a quick look at vitamins specifically required for hairgrowth and apparently vit d deficiency is common in those with alopecia and agree with SeasideSusie in regards to needing a much higher dose than suggested by medichecks as it will take too long at that dose. Also follow her advice on other vits and you'll be good.
The other vits mentioned for hair were fish oil/omega 3, all the B vits, iron, vitamin C and zinc so I think a complete overhaul of your diet might be required to ensure you're meeting your requirements - add fish a few times a week, lots more veg and fruit, and also agree with a gluten free diet for now.
Then retest the ones you did with medichecks after a couple of months and see where you're at
Oh - you should also get a bone profile blood test done by your docs as your calcium might be very low if you've been vit D deficient for quite some time
I have Alopecia totalis Universalis and diagnosed in 2015. The best info that I read was that autoimmune conditions Hunt in packs so it is very common to have more than one. I have 3 at the moment! I can really recommend the charity Alopecia UK - they do fantastic work and give loads of advice on being bald. A dermatologist is needed to do a scalp biopsy (not painful) to see what type of alopecia you have - it needs a specialist not just a GP - no offence to GPs! Good luck and good advice from the other replies as well x
Hi all thanks for all the detailed responses support and guidance this has been so helpful! I will come back and update you all after I have been to the GP. I am focusing on getting my diet right in the meantime based on advice above update to follow! Thanks for everything
So I’ve been to the doctors and wanted to let you know of the update! So overall felt like quite a dismissive meeting and the doctor did not seem impressed that I had gone and taken private test. He did not even read the comments in the report just looked at the numbers and said everything is ok we have to monitor it etc. Apparently VIT D was prescribed to me although never did he make me aware of this as I think I would’ve known.
Anyways collected the medication and it is
Invita D3 50,000 IU to be taken once a week for 6 weeks.
In regards to everything else was completely dismissed. I could not get any response just let’s see and monitor. I guess I just need to start taking responsibility for my own health as these GP’s are like talking to brick wall.
I have gone gluten free now and typically my days consist of
Levo in the morning 1 hour before breakfast
Gluten free oats / eggs and gluten free bread tomatoes and spinach
Makarel with spinach and mushroom white rice on the side - or sardines/salmon
Chicken and rice - also will start the liver and incorporate different types of veg
Turmeric latte with semi skimm milk
2 Brazil nuts per day
Vitamin B complex
Fruit smoothie
I want some advice on anything I might be missing out on. So the doctor did not have a clue about the vitamins needed for VIT D to work. He just suggested to take wellwoman multivitamin?
Do I need to take K2-MK7 - if so, how much?
Magnesium / Calcium / Iron?
In regards to T3 he said about it not being available again let’s wait and see, too many variables. He also confirmed that from some previous test that I don’t have anaemia? Not sure how much to trust it.
In regards to the CRP he said this is a very non specific indicator of nothing - and to totally ignore it. It does state on the report from medi checks that the type of CRP taken is one that can indicate a future risk of cardiovascular disease.
Overall he just wanted to get us out of the room and said everything is normal. Attend the dermatologist appointment about my hair and see what the outcome is - this is 20th Feb.
I'm glad they're dealing with the Vit D - to be honest, If they had a test done previously, I might make a complaint to the practice manager as you're levels were dire and even if they did prescribe (suspicious), why didn't they follow up and retest to ensure it was working and so on. He may have just said you were prescribed to cover his own backside - I would check.
Remember to get them to retest after to check where you're at and prescribe a maintenance dose thereafter as per guidelines.
Yes, unfortunately, the only option is to take it into your own hands - and yes, they are mostly very dismissive and ignorant!!
Really great about your diet changes - seems a great start - be careful on the oily fish like mackerel though (high mercury levels) - maybe 2-3 times a week max or mix up with other white fish like cod and other meats. Smaller oily fish like sardines are great though. COd is good for iodine too.
Have lots of veg to snack on during the day to increase that folate - I often chomp on raw things like baby bell peppers, sugar snap peas, carrots etc. Bananas are great for potassium.
Mix up the spinach a bit with other green leaves - don't want huge amounts of spinach every day.
Remember to get some wholegrains and more varied carb types into your diet. I love sweet potato fries with steak, there are also plenty of other GF grains and psuedograins that you can eat including quinoa, buckwheat, amaranth sorghum, polenta. You can buy a lot of these easily as breakfast cereals - such as nutri-brex. I also buy food doctor ready made quinoa and chuck with a salad and fried choritzo and haloumi and chickpeas. Ready made polenta is nice as a lasagna sheet type alternative. New potatoes are quick to cook with anything as well as other potatoes.
If it would help, you can use a site called cronometer where you plug in what you're eating every day and calculates all the stuff you're getting and will show any areas where too much or not enough etc if used correctly. even tells you if getting enough water and calories etc. There are different options when picking your foods from the database but if you always pick the ones listed as USDA entries, these will include all the micro nutrients and trace elements. You can also add your supplements but don't worry so much if this is highlighted as too much if correcting a deficiency at the time. Takes a few days to get used to but then is quick to fill in after that as you can copy previous days and add and remove where required.
In regards to iron, I do think that an iron panel and blood count would be useful as ferritin can be falsely elevated when inflammation is occurring so you might need more than foods to get it up. If they apparently tested previously, you can ask for these results from doctors receptionist or see if they have online access. Just call them and see if they can find the results for blood count/iron panel.
If you want more specific advice on K2 and dosages and other specific vits etc, start a new post with these specific questions as people here sometimes don't see older posts.
I'm glad you're positively making changes - hopefully you will start to feel better soon
Oh and schar GF seeded bread is a nice one (many aren't) and you can pick this up at many smaller co-ops and express sainburies. Marks and Spencers has some yummy GF foods and treats lol
Thanks for the food tips and all the advice saggy. ! I am slowly introducing these into my diet and trying to get in right to improve my energy levels etc.
I will touch base in a few weeks to let you know how it's going, and what i've been doing
Just wanted to give you bit of an update and let you know where I'm at.
Vit D3:
I had started my 6 week course of Vit d3 50,000 at the time I felt so much better when I was taking it. Then it had finished and I requested maintenance dose - doctor refused to prescribe a maintenance dose at first (asking me to buy at counter instead) however after couple of weeks of no Vit D3 i managed to convince the locum doctor to prescribe me a maintenance dose so I've got D3 1,600mg per day to take now (2 pills of 800). I wanted to know if my levels are ok now/improved but the doctor also said they would not be able to test me again for vitamin D (apparently only able to do it once a year so even if they request it will be refused?!). Mind boggling really as I was previously really deficient and therefore prescribed so would think they would want to test at the end of the course to see if my levels are ok now!
Hair loss:
At my appointment with the dermatologist, I had been diagnosed with alopecia totalis. The consultant was specialist in hair loss has recommended Dermovate cream, and diphencyprone (DPO) treatment. She did not make much of a connection with thyroid except that its common for autoimmune diseases to come in packs of 3. I forgot to mention at the time that (according to my last test posted above) it does not appear that my thyroid is autoimmune. Since then I had also lost most of my eyebrow hairs and rest of body hair is reducing or gone.
Symptoms/Thyroid/NDT:
I am actually feeling quite terrible at the moment, to be honest, I am very sleepy - tired - lack of energy - weight gain all the symptoms of underactive thyroid again. The doctor I spoke to just looked at TSH levels "normal" and said that's fine. But I was able to request another test - so have one coming up on 17th April. I presume they will do the usual thyroid function test - is this sufficient?
Previous NHS blood test:
I have managed to get hold of previous blood test that was completed in Nov 2017 - it looks to be quite comprehensive. I'm not sure if you can see the link below:
I have been doing some research online and seriously considering switching to NDT (most likely - thiroyd) starting at 1 grain. Naturally, I'm a bit cautious about going ahead with this without endo/doctor approval - so wonder if there's any advice you have for me?
I understand I will have to do lot of self-testing etc and I feel like I need to do another test to see where I am before I start this. What type of test shall I do and what should I monitor? I have found links in USA but struggling with UK equivalent something that is not too costly to use as tool for measuring until I get to my "optimal" dose. I understand I need to test my IRON and SALIVA (CORTISAL) levels before starting and get these optimal too - is there somewhere in the UK I can get these tests done? Would I be able to use the normal thryroid function test provided on the NHS as a tool to monitor my NDT dosage. What is the optimal dose?! Any advice/opinions appreciated.
Thyroid testing:
The last test I purchased from medichecks costs £169 but I'm not sure if there are cheaper options (do I need to test for everything there or would you recommend one of the other test packs to give me the information I need?).
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