I've just looked online at my latest test results and the top box from my surgery says 'Result - Satisfactory' and 'What you need to do - No Further Action'.
Quick history... I've got hashimotos, diagnosed in 2018, started on levothyroxine in 2020, noticed significant hair thinning/loss/balding about 6 months ago so have been trying to solve this problem. I started HRT in Jan 2022 but neither the doctors I have spoken to nor the endocrinologist think that this might be a link to my hair loss.
Here are my results from 30-8-22 and also what I was 6 weeks ago when my levothyroxine was increased from 25mcg to 50mcg. (I followed all the recommended blood test procedures and the test was at 9am).
Serum vitamin B12 level 358 ng/L [197.0 - 771.0]... was 379 so slightly decreased
Serum ferritin level 26 ug/L [13.0 - 150.0]... was 27 so no real change
Serum iron level 15 umol/L [5.8 - 34.5]... was 14 so slightly increased
Serum TIBC 66 umol/L [45.0 - 70.0]... was 63 so slightly increased
Saturation of iron binding capacity 23 % [25.0 - 45.0]... was 22% so slightly increased
Serum TSH level 0.62 mIU/L [0.3 - 3.94]... was 1.94 so definitely lower now
Serum free T4 level 16.1 pmol/L [12.3 - 20.2]... was 14.3 so has increased from first quartile to mid-range
Serum folate level 8.4 ug/L Folate Reference Range: > 3.8 ug/L... was 10.9 so decreased
Serum total 25-hydroxy vitamin D level 73 nmol/L... was 69 so slightly increased
I'm currently feeling fairly angry and unsupported by the doctor, who arranged these tests and has now received and read my results, because the recent letter from the endocrinologist I saw back in July clearly says in my 'plan' that we are 'aiming for free T4 in the upper quartile'. I am currently only in the middle of the range but, I know if I don't query this, then obviously my surgery would be happy to let me carry on as I am.
I have learned from the great advice on this forum that you need to be your own advocate so I am going to ask for my levothyroxine to be increased to 75mcg. In a previous post, I have been advised that as I weigh about 69kg that 50mcg is still a low dose.
My B12, ferratin, iron, folate and vitamin D have barely changed since July but I am ready with a bunch of supplements I have recently purchased after advice on here (see photo attached of my line up!!!). I didn't start taking them before my latest blood test - mainly because it took me a while to choose what might help me and then I didn't have enough time to start them before I would need to stop them in time for my blood test. I have, however, really been considering my diet since recent advice on here and started eating liver/liver pate (mmmm!) and other 'iron rich' foods.
I have just started taking the supplements (gradually introducing each one to watch out for side effects). I started last week with Gentle Iron and Vit C). I will ask for another blood test in due course to see if my levels have increased.
My hair has not improved at all despite diet changes and, in fact, I am feeling that it is actually getting worse with more balding areas on my crown. I have been using the 'Luvme care Hair Growth' oil for about a month with no obvious improvement apart from making my hair lank and shapeless.
My main questions to the forum are:
1. Am I right to ask for a dose increase in levothyroxine?
2. What order would anyone recommend me introducing the supplements in my photo with regards to time of day? My plan was to take:
- Nature Provides VitD3+K2 with breakfast (which is normally 1 to 2 hours after I take my levothyroxine first thing in the morning)
- Thorne Basic B Complex with lunch
- Solgar Gentle Iron and Vit C with dinner
- Vital Haven Magnesium (Citrate, Glycinate & Taurate) at bedtime - I am a bit concerned that this also contains Vit B6 which is in the Thorne Basic B Complex. Would this mean I am overdosing on B6 or will any extra just be excreted?
Many thanks in advance for reading this and any comments/recommendations will be gratefully received.
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Feelingrubbish
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The brand is Teva which is pretty much consistently what I have always be given from the beginning when I was on 25mcg. I think I have tolerated it okay with no specific side effects that I have seen detailed here on the forum.
Re. coeliac test... no, not yet. The last telephone appointment I had with a doctor from my surgery was focused on my previous results from July. I will add that request to my request for an increase in levothyroxine.
Same …….hair thinning, tired, kept going up on Levioxyl with no results. Tried diet change …on and on . Even went to a reumatologist they said I had fibro myalgia . This went on for 1 year till I was finally diagnosed with breast cancer ! Opps ! They all missed it !
Just to say that if you are undertreated hypo the chances of breast cancer are raised by 200 times. So be vigilant and check those puppies. I was diagnosed with BC after my GP messed with my prescription.
Thanks very much for that information of which I was unaware and I doubt many 'medical personnel' are aware of any problems that could arise if we aren't prescribed what is the best for the hypo patients.
I'm fortunate to have already been diagnosed as having a condition called:-
Polyglandular Autoimmune Disease No. 3.
i.e. pernicious anaemia for which I get a monthly B12 injection. instead of quarterly (which is usual).
Hypothyroidism. - Now Prescribed T3 only.
So I feel well and symptom-free due to having the correct replacements.
I think that if we've been on a repacement hormone for some time and feel well then we begin having symptoms again it could be due to some change in our thyroid hormone replacement.
It would be interesting to see links to the studies which validate this supposition as most of the evidence I have come across suggests a minimal association of BC with hyperthyroidism and high FT4.
In week before blood test, when you stop your Thorne vitamin B complex, you might want to consider taking a separate methyl folate supplement and continue separate B12
With serum B12 result below 500, (Or active B12 below 70) 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.
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.
I hadn't started the Vit D drops until this morning. I took 5 drops on a spoon with my late breakfast but I see from Seaside Susie that I should wait to take them later.
2. What order would anyone recommend me introducing the supplements in my photo with regards to time of day? My plan was to take:
- Nature Provides VitD3+K2 with breakfast (which is normally 1 to 2 hours after I take my levothyroxine first thing in the morning)
- Thorne Basic B Complex with lunch
- Solgar Gentle Iron and Vit C with dinner
- Vital Haven Magnesium (Citrate, Glycinate & Taurate) at bedtime - I am a bit concerned that this also contains Vit B6 which is in the Thorne Basic B Complex. Would this mean I am overdosing on B6 or will any extra just be excreted?
Swap the D3/K2 with the B Complex. The B Complex only needs 2 hours away from Levo, the Vit D needs 4 hours.
Iron is said to be better absorbed on an empty stomach so you could take that 2 hours after your B Complex or maybe an hour before your dinner. It shouldn't upset your stomach as it is the gentle form of iron but if it does then you could take it with your dinner but possibly less will be absorbed.
The amount of B6 in the magnesium supplement is 6.1mg and in the Thorne Basic B is 10mg. The recommended amount for regular daily dosing is 10mg. Long term high dose B6 can cause nerve damage and other problems. I'm guessing high dose actually means a fair bit higher than your total dose. Try it, and if you get any tingling or other problems you'll know to rethink this.
I'll swap the B complex with the Vit D and take the iron before dinner (the bottle does say 'preferably at mealtime' so I was just going by that).
I only started the Vit D this morning (5 drops with a late breakfast) and it gave me indigestion and 'full feeling'.
Thanks for confirming about the B6, I certainly don't want to add to my problems so I might look at an alternative magnesium. TBH I was a bit confused as to which version of magnesium would be best for me so the Vital Haven one looked good as it was a combination of 3 types.
First the hairloss, two things that stand out is your ferritin is really low. If I remember correctly it needs to be be around at 70 before your hair will start growing properly. I'm betting this is probably why you're not showing any regrowth or reduction of shedding. I'm sure Seaside Susie or Slow Dragon will have more advice on improving iron levels.
Secondly your FT3 hasn't been tested and this is the most important hormone. This is the one that if its too low will make you have hypo symptoms including hair loss. Maybe you need to test privately to see where your FT3 levels are at. Chances are that if you're still on 50mcg of Levo then your FT3 will be too low.
In all honesty I think you need more iron than you are getting in that Solgar supplement. Maybe consider buying some Ferrous Fumarate and taking that, if you can tolerate it.
Thank you - I will look into Ferrous Fumarate. I chose the Solgar one as I don't want to be constipated anymore than I can normally get if I don't watch out and eat and drink the right things.
Re. FT3 - I've never had it tested by either a doctor or an endocrinologist. The last endo I saw, said that it wasn't a test they did as they rely on the TSH and FT4 results. Obviously, I have read a lot of this forum about the relevance of having FT3 checked and am certainly prepared to have this tested privately if needed once I feel I am on the right dose of levothyroxine.
I have a telephone appt booked with the endo in mid-October and by then I want to have had my levo increased and bloods checked again. In the letter to my doctor, the endo said "If, despite increasing Levothyroxine and normalisation of thyroid function and the rest of the investigations being normal, she continues to have symptoms, I will refer her to dermatology for further investigation and management of alopecia". At the moment, my thyroid function is not 'normal' and the rest of the investigations are not 'normal'.
Thanks SD - I'll take a look and thank you again for your suggestions. I am feeling much more informed since joining this forum and even more determined to get better.
I've been very anaemic myself over much of my life for various reasons. I've found Ferrous Sulphate the hardest to tolerate, it often causes stomach problems. Ferrous Fumarate which you can buy from any chemist is OK.
Probably the gentlest prescription strength is Ferrous Gluconate. I'm not sure if you can still get it. I think if memory serves its not as high in iron as the other two. All of them have the capacity for constipation so make sure you drink plenty of fluids and maybe step up your fibre intake. And you will probably get black poo lol so don't worry 😆
It's fair enough if your Endo is going to refe you to Dermatology for your hair loss but chances are if you can get your thyroid and ferritin levels up to optimal your hair will improve.
Any good Dermatologist or Trichologist ( hair and scalp specialist) would test them anyway as they are very common causes of hair loss.
Dermatology will be useless. She needs a trichologist who will look at her iron levels and confirm what we are saying to her doctor. I had to pay privately for one of those years ago.
Your falling hair is probably a direct link to your dire ferritin level. Any ferritin level under 70 will start to cause hairless. Eat more pate. Take more iron, Solgar Gentle Iron might be gentle but it never raised my levels. Aim for ferritin of 80-90.
Thank you. Yes, I’m definitely going to work on my iron but have taken on what you say about the ‘gentle’ iron. I chose that as I’m often susceptible to constipation. Pate is on my weekly shopping list now!
My GP accepts and files away any levels in range or even slightly out without discussion too. Hospital consultant told me once my ferritin needs to be over 100, and gave me high dose iron sulphate, horrible stuff, never again. I've always had ferrous fumerate before that and been ok and now trying some of the iron bisglycinate too instead, ingennus, also 20mg, to see how that goes as my levels have dropped again and I'm nervous after that sulphate stuff. But I'm above 70 so not so far to go if it doesn't do much. I wonder what hope we have when they don't understand basic vitamins and nutrition? Such a relief to have the wonderful advice on this forum!
For an accurate thyroid function evaluation you really need to have FT3 tested
It is the active thyroid hormone which, for good health, needs to flood almost every cell in the body
Low cellular T3 = poor health.
50mcg levo is still a small dose....suggest you test again after 6/8 weeks on the increased /steady dose. The result will point the way forward....I suspect you will then need more levo
Basically you are undermedicated and slowly raising your levels into the upper quartiles should improve things
Optimise nutrients as the others have advised.
But....you will need to be patient because although there is no quick fix, time and the correct medication should resolve most or all of your symptoms.
Thank you DD - yes, I'm hoping to have no problem asking for an increase as I'm not in the upper quartile yet and I am getting started with the supplements.
I've been feeling a bit rubbish today and think the D3+K2 has affected me (indigestion, bloated and feeling uncomfortable/full). I think I'll leave that one out for a while and start the Thorne Basic B Complex tomorrow.
And thank you for reminding me to be patient... that's a hard one but I can see from reading posts on here that it has taken a lot of the members lots of patience, perseverance and time before they have felt better or even on the way to feeling better.
Good luck....yes, it took me around 2 years to get anywhere close to a therapeutic dose which is why I push the importance of sticking with it. Don't be surprised if you have off- days it doesn't necessarily mean the treatment isn't working,it's most likely the body making adjustments.
An old medic friend used to emphasise...." Listen to your body".
Hi ive had an underactive thyroid for 15yrs and all in the post is absolutely new to me! Can I ask as I'm new here: is this in UK or overseas?
I think you can ask your gp to increase your dose and see what they say.
With the supplements: has your gp told you to take them?
Hair loss could be a number of things. Even something simple like increase of stress and anxiety. Perhaps discuss with gp. Hair growth shampoos etc wont work if theres an underlying cause to the hair loss... will need to find out the cause and get medication to treat... it may be temporary... I've had episodes of hair loss due to catching infections and body can go into shock- hair starts to shed.
All answers you need would be best discussed with gp incase weve missed out something underlying which needs to be investigated.
Hi Lola_Jasper - I'm in the UK but I'm pretty sure this forum is worldwide.
Yes, I'm going to ask for an increase but no, the doctor didn't say take supplements apart from 'maybe take some iron tablets'. The doctor didn't seem bothered about my vitamin/mineral results because they are mainly within the 'normal' range even though they are very low and I have hair loss/balding. I've realised I have to go it alone with this. Luckily, I have the excellent support and advice I have been receiving on this forum
I was just wondering as I take 150mg levothyroxine but my gp has never mentioned anything about supplements.
Doctors arnt always right... I kept telling and telling my gp to increase my levothyroxine. First from 100 to 125- then bloods showed still too high 3mths later, I said I need increasing to 150 ( I didnt feel well and I know my own body) the gp increased to 137.5. 2 weeks ago bloods were still too high so went onto 150. Feeling bit better. Took over 6mths to get increased to 150 and feeling ill. I knew from previous years if at a certain level to go to 150. These days I dont see the same gp so lack of communication half the time.
I hope you get yours increased. I dont actually know much about thyroid issues- even after 15yrs because have other long term illness which are more of an issue. I should learn more!
Many doctors do not have sufficient knowledge about dysfunctional thyroid glands and I have had a comment from one of my GPs and I told him 'that is untrue'.
Also that I had to diagnose myself when GP told me I had no problems at all and blood tests were fine. TheTSH result was 100 and I was feeling quite unwell.
Yes, I've bought the Luvme product (I think on your recommendation) but, after nearly a month, am finding no difference apart from lank and lack lustre hair. I'm so sorry to hear that you haven't found a solution
Sorry to hear this on top of everything else you have to deal with Shaws. The effects of hair loss is not really understood by doctors.....they think a quickcry and you all sorted. They dont understand that hair is linked to your identity. I lost the vast majority if my hair due to chemo......never came back, what I have is a nuisance....definately not attractive. Some big lawsuit going on in America as the producers of that specific chemo witheld the data of the side effect. Hair products did nothing for me. Dermatologist diagnosed it as permenant alopecia induced by chemotherapy. 7 yrs on no change so I guess shes right, I live in wigs. Lol...
I'm sorry you had to have chemo but hopefully it did the work needed to help restore your health.
People I've not met previously have no idea that 'my hair' is a synthetic wig.
On going to an expert on hair loss a couple of years ago (I had no hair at all), my husband was with me but on leaving the doctor my husband said to me 'no more injections' as he was in the room when the doctor injected my scalp overall with a number of injections.
Hair did begin to grow but it dropped out again some months later.
Awww Shaws sorry to hear that. It must be awful to be filled with hope when you see signs of growth only to be crushed when it falls out again. Sending you big hugs.
Im resigned to my hair loss. It wouldve helped if Id been told of the risk beforehand and then I couldve said goodbye to it. The hospital have changed their advice sheet because if me. It no longer says your hair WILL grow back but says there is a small possinility it may not. Am glad theyve done this. Its all I wanted......they warn you of so many other potential side effects its only right hair is included. And yes treatment saved my life for which Im very grateful....
Yes, I think having it with my breakfast was a mistake. I’m still feeling uncomfortably bloated and full today, more than 24 hours since I took the D3+K2 drops.
The thing is when all in range/borderline "satisfactory" is the term used, they are not going to say something else when all in range as they're just looking at the range
They should however take into account previous tests like 1.94 TSH to 0.62 is a BIG change in 6-8 weeks!!
If it carries on then surely that is going overactive then, and levothyroxine is for an underactive thyroid so surely increasing that is only going to make it more over active? I would not change dose until you speak to your doc. I don't get how you got all that other stuff tested I've never been able to manage that! Your supplements sound like a lot of effort, but with no T3 tested then I am not sure how they are working out you are still underactive when that does show it is going in the direction of being overactive. However 0.62 is still in range which is why they show as "acceptable" but I do agree the results looked better previously. My endo says TSH around the 1 figure is what they like
Don't worry, I'm going to speak to my doctor and request an increase. I won't be self-medicating - I'd run out of what I have and am not planning to buy levothyroxine.
I'm not really looking at my TSH but my Free T4 which my endocrinologist said we should aim for the upper quartile and I'm not there yet. I think her feelings were that when my levels are improved, my hair loss should improve. I'm upset that the doctor did not refer to the letter sent to my surgery from my endo stating that fact when they just went and filed my recent results as 'no further action'.
With regards, to all the tests I had via my doctor, it was on the test request sheet from the endo. Hopefully, if I get an increase, they will test everything again so I can see if taking supplements has helped.
I'm certainly not feeling 'overactive' in spite of such a low FSH and I've never had my T3 tested. The endo said that was not relevant as we only needed to look at the TSH and Free T4. I know I have an underactive thyroid as I was diagnosed with Hashimotos 4 years ago following investigation on a 'lump' in my throat which turned out to be a goitre.
You are right we need to chase things up and educate ourselves, normally the GP only notifies us for a check up if results are out of range. If in range or borderline it's like a tick box thing they say it's ok no further check up .... when really maybe the GP hasn't even fully seen the results and factored in the full situation!
There is a lag so the way I saw it in my head was 1.9 ish to 0.6 is a big change whereas I've gone from 0.18 to 0.29 TSH in 8 weeks, so next time I should be in range (hopefully!) but if yours carries on the same way then it could then be way further out of range. I am not the most clued up I just look at the patterns. When I was on carb they would adjust the dose but then you have the lag. I would not say you would see improvement on the hair loss issue in 8 weeks, as you are still on the lag and waiting for the levels to improve so it will take some time but hope things start to improve as soon as possible
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