I posted recently about my ridiculous amount of hair loss/blood test results. I didn’t get round to replying to the comments (sorry!) so will leave a huge thank you here, they were extremely helpful!
I just had a phone consultation with my GP and don’t know what to do anymore!
I should mention that I was only on 100mg levo when I had the blood test from my last post, I only increased to 150mg about a week or so ago. I was having severe hair loss, no energy, feeling tired all the time etc. As my T4 is at the very low end of the range, I increased straight to 150 and feel much better although hair loss hasn’t stopped.
I explained all of the above to the GP, who said there was no need to increase it because my T4 was already normal! I said ‘yes but it was at the low end’, to which she responded ‘yeah but it’s still in the normal range’. Eventually she agreed to increase it ‘for symptom control only’ but said she’ll only prescribe me 125mg. I’m really not happy with this as I highly doubt 125mg will get my T4 to the higher end of the range.
She also refused to entertain the fact that I have iron deficiency anemia. My iron was low at the end of February, when I took a private blood test. A different GP prescribed me a high dose for a month (ferrous sulfate), and now my iron and ferritin are normal. Hence she says I don’t have iron deficiency anemia, and to ignore the fact that my RBC related results are all off.
The phone call ended with her telling me to take 125mg levo from now on, and saying she will retest thyroid in 4 weeks. I asked about getting my other vitamins tested too, but she said it’s not necessary to test anything else.
I’m really at a loss as to what to do. When I had my thyroid removed 2 months ago (Graves’) I had no clue my endo would immediately discharge me and I’d be left dealing with useless GPs. I HAVE BARELY ANY HAIR LEFT! IM LITERALLY GOING BALD!
Can anyone please advise
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UnderactiveMe
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‘for symptom control only’ Funny, I thought that was the point of medicine.
I would write to your endo and say you're sorry but your GP is useless can they give some advice or take over your care for a few months.
TSH can often be low after Graves' usually for many months. This abnormally low TSH reduces T4 to T3 conversion. Doctors should ignore the TSH in these circumstances until it recovers and reflects the hormone levels.
If the hair loss is thyroid related I suspect your hearing might be affected also because in hypothyroidism we can temporarily lose the fine hair in the ear that helps transmit the sound.
If your results are similar in a months time and you feel the same I would ask the GP to consult the endocrinologist as she is perhaps out of her depth. Doctors should not work outside of their capability, it's a breach of Good Medical Practice.
Thanks for the reply. I think I will contact the endo as you suggested. I think it’s shocking that I was abandoned as soon as I removed my thyroid, and had I known that I probably wouldn’t have removed it!
The GP just can’t wrap her head around the fact that I want to increase my levo, because ‘it’s already normal’. It was like pulling teeth. She also won’t test B12, folate, etc, as it’s ‘unnecessary’.
She also refuses to treat my anemia or even acknowledge that I have it, and simply tells me to ignore the out of range results.
What am I paying taxes for if my symptoms and blood test results are all ignored?!
Can only guess it's a means of giving better control of T3 levels. For example during serious illness or starvation T4 to T3 conversion is reduced. It seems reasonable that the pituitary needs to send a message to make less horomone and convert less T4 to T3 and TSH is a convenient messenger.
I've noticed that patients on this forum with low normal TSH, fT3 and fT4 often have severe symptoms. Classically during primary hypothyroidism as fT4 falls TSH rises rapidly. This stimulates the thyroid to work harder secreting hormone and increases the rate of deiodinase (fT4 falls, TSH rises and fT3 remains relatively stable until there is too little T4 to convert). This is why TSH can be a good marker for thyroid failure.
If the pituitary underperforms there will be less stimulation of the thyroid and less T4 to T3 conversion leading to profound symptoms.
Sometimes TSH recovers after a few months, sometimes it doesn't.
Is there a different doctor in the surgery where you are registered ?
As you have Graves Disease it is essential that you are dosed and monitored on T3 and T4 blood test results and NOT a TSH as the TSH in Graves patients is known to be an unreliable marker.
Your TSH may come up and back into range, mine never did, and the reason why I became so ill after RAI thyroid ablation for Graves.
There is another GP but to be honest they both seem clueless in regards to thyroid issues.
She is going by T4 rather than TSH, which is 0. She kept saying my T4 is normal (despite being at the low end of the range) so 100mg is the right dose for me and no increase was necessary. It was only after much protest that she agreed to prescribe 125mg but didn’t seem very happy about it, and said she was increasing it ‘for symptom control only’. 125mg won’t be enough to bring my T4 to the high end of the range
If I only increase in steps of 25mcg I’m screwed because she’ll continue to say my FT4 is normal and refuse to prescribe more/do more blood tests. She’s only doing another blood test because I took it upon myself to increase it, if I hadn’t done that she would have brushed me off with ‘it’s normal so that’s that’. I feel better already on 150
I get different brands every time
I haven’t tried gluten free
Thanks for the advice on T3, I had actually already bought some before my thyroid was removed because I heard it was essential for people to feel well. But it seems I’m converting T4 > T3 really well so don’t need it?
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap. Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
Vitamin levels need retesting regularly and frequently need supplementing virtually continuously to maintain optimal levels
If you rush increase in dose too quickly it can backfire
If you check out replies from our very own vitamin and mineral queen SeasideSusie you will get a better understanding of where your vitamins and minerals should be for optimal levels and thereby optimal conversion of your thyroid hormone replacement.
The NHS ranges can be wide and all that being in range means is that you will not qualify for a NHS prescription to supplement. Doctors apparently, are not taught about vitamins and minerals and so this area of our health is down to us.
There are many articles on low ferritin, and the implications when on thyroid hormone replacement, I can't remember exactly where I read this, and in fact I think the ' magic number was said to be 70 ' but I know now where I feel better and for me, ferritin needs to be at around 100.
Very rough wide, look at the ranges and aim for around 75% through - the same will apply to your T3 and T4 thyroid blood test results, you may be in the range somewhere, but not necessarily with balanced hormone levels, or at the right levels within the for you to regain your health and well being.
P.S. I trust you have continued building up on your Levothyroxine dose during these past few months and are now feeling some benefits from this thyroid hormone replacement, though guess with a better level of ferritin, and possibly folate, B12 and vitamin D further improvements may be felt.
Amazingly helpful, thank you so much. I’m finally up to 75mcg due to my own pushing and ignoring the GP who wants me to have blood tests only every three months! I also started last week to pay privately for B12 injections as I have all the symptoms of low B12 but my B12 is consistently above range without supplementing. I’m going to go eat some chicken liver now to try to push up my ferritin!!!
I have just deleted my reply because I didn't realise I had replied to your previous thread. I think you might need T3 or NDT because a lot of people without a thyroid or who have had RAI need both T4 and T3 to feel well. Have you asked your Endocrinologist about it?
Also have a look at Elaine Moore's site she has a lot of information on there. She had RAI and helped me get diagnosed 10 years ago.
You can't judge your T4 to T3 conversion because your fT4 is low. The body tends to conserve T3 when hormone levels are low. You could be converting well because Graves' antibodies can stimulate conversion but we can only see that when your fT4 is at least mid-interval.
Have you looked into hair clinics some give a free consultation and can give treatments to people who are suffering hair loss due to thyroid problems etc.
You said that your iron/ferritin are "normal" what exactly do your labs say. Normal and optimal can be/make a difference. Have you have all four (4) iron labs done at the same time TIBC (total iron binding count) / % Saturation / iron / ferritin.
Women when optimal:
Iron: ~110 (or 23ish in ranges that go up to 27)
% Sat: 'close' to 34 or 35% (or .34 / .35)
TIBC: ~low 300's, sometimes lower
Ferritin: 50's or higher (optimal 70-90)
Men when optimal:
Iron: upper ~130's (or upper part of range in Canadian or European ranges that go
Thanks for these optimal results, very good to know. I’m not sure what to do as GP clearly doesn’t care about optimal, as long as I’m within range (even if it’s right at the low end) she will say everything is fine and no further action is needed
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.
Well with ferritin of 39 I'm not surprised you are loosing hair. You need to bring that up to 80 or 90. Anything under 70 will cause hair loss according to trichologists. For some reason I have issues with iron, can't seem to keep it in the higher end of normal without constant supplementing, I suspect it's because my thyroid levels have been kept low for too long. It has resulted in a lot of hair shedding over the years and it is distressing, it's not too bad currently. But I need to constantly supplement to keep it up. And when you supplement iron you need regular testing to make sure you don't have too much (never even got close in my case) so I have to test myself most of the time. I have found a pill supplement and eating iron-rich foods/cooking in an iron pan is required to get levels to move.
Please write to or ring your ex-endo's secretary and beg to go back to him for treatment because your GP will keep you sick.
I listened to a really interesting top New York trichologist on the radio a few years ago, an older, experienced man. He said he had a lot of socialites and actress type women coming to him for advice for hair loss. He said they are all very slim/thin and are obsessed with it. They think a good lunch is a salad with a tiny bit of some protein because thin is all and then they wonder why their hair is falling out. He said ferritin must be over 70 to stop shedding and higher for good growth and condition.
I consulted a trichologist myself in my late 30's because I was loosing so much hair and scared of it. I used to have so much hair I couldn't wear hats because the hair volume just pushed them up and off again. She tested and the first thing she did was put me on iron tablets. But when things recovered somewhat and I stopped needing to see her regularly and forgot about it, after a while the loss returned and I didn't really connect the dots. I wish she had suggested thyroid back then because I think that's probably when my issues were starting and we left them untreated for more than a decade. And here I am with dreadful conversion to T3 now and struggle to keep ferritin up anywhere near 60 let alone 70 and consequently I'm often suffering with hair loss still.
My ferritin was very low when I was first diagnosed but it is now very high because I have inflammation because my antibodies are very high and I have a multi-nodular goitre. I am actually now only losing 3 hairs a day! Yippee! after losing hundreds for 2 years because my T4 and T3 were too low. What I do know after having two bouts of heavy hair loss is that your thyroid levels have to be right because mine will fall out if they are too high or too low. It also affects my nails and I know something is not right when my nails start to lift off their beds. My nails have now re-attached thank goodness but I know this won't last for ever. I try to eat a healthy diet and avoid refined sugar but it has lapsed a bit during the lockdown and I have eaten a few chocolate bars.
Thank you for this information, it’s very helpful as the doctors won’t tell you this sort of thing! I booked a phone consultation with my regular GP (not a random one like before) on Monday, he’s quite good and usually receptive to my hearing my thoughts on my treatment and symptoms. I’m going to write a list of everything I need him to test so I don’t forget anything. I’m hoping he will be more helpful, if not I will definitely demand to be referred back to endo.
In the meantime I’m going to start taking a high dose of iron, zinc, and B12. If I don’t do anything I will be bald soon. My scalp is visible through my hair now, which is never was before. I always had really thick hair. It’s actually disgusting how uneducated doctors are on thyroid issues, is anyone campaigning to change that?
A lot of people have been trying to change things. I actually asked my local MP to write to Matt Hancock and you can read the reply I got on my profile page if you scroll down. I really do not understand why the NHS doesn't want to improve the way thyroid disease sufferers are treated because I think it would save them a lot of money. My husband and I actually worked for the service for many years and although they are doing well treating Covid-19 sufferers they are sadly lacking when it comes to treating us.
I am in the same boat on both counts FP54 - too hypo too long and hair loss with ferritin around the 14/15 mark on the last test. My GP said the endo she was referring me to would look at the iron tests and ferritin (why couldn't she???? surely her medical training should qualify her to assess that?) but sadly he didn't so one year on I am no further forward.
I’d be pretty happy to increase by 25 especially as dr will retest after 4 weeks (my docs won’t test I have to do it privately). You may well see improvement in 4 weeks and if not You’ve an argument to add another 25 then. I feel your pain and frustration but don’t think your Dr is way off here - however your Endo signing you off is shocking!
Two crap doctors don’t make a good one... We shouldn’t have to be happy with substandard ‘care’. My GP won’t increase my dose, even though my FT4 is right at the low end of the range she insists that it’s normal so 100mcg is the right dose and no further action is needed. She’s only retesting because I took it upon myself to start taking 150mcg a day. If I asked her first, she would have said no to an increase. Guarantee she will not approve another increase after this blood test, regardless of how crap I feel and the fact that my once thick head of hair is now close to baldness. She also refuses to test my vitamins, which as everyone on here has said are essential. She also keeps telling me to ignore low hemoglobin and platelets, and won’t entertain the idea that I need more iron. Personally I don’t see what there is for me to be happy about? Guess I should be overjoyed that I’m literally almost bald, and can’t get through the day without a nap?
I just called and asked to speak to a different GP, who is going to call me on Monday. If they don’t do anything I will demand to be referred back to endo. I’m actually really angry that I was just abandoned as soon as my thyroid was removed, and I’m being left to deal with idiots who don’t understand that being ‘in range’ (at the very low end) means absolutely nothing if I still don’t feel well?
My thyroid was removed last year due to it being toxic and I put that down to my gp ignoring my symptoms he put them down to the menupause typical,, I also started loosing my hair and are now very thin on top. I've never managed to have any normal thyroid bloods since unfortunately I am lactose intolerant and it took 6 months for my endo and gp to recognise this.. I do feel we as thyroid sufferes are not treated correctly I also have very bad issues with my gp who clearly has no knowledge of thyroid issues, where as we who live with the condition clearly do who in their right mind would refuse letting a sufferer who feels OK on a level of thyroid hormone want to lower that dose just because your bloods are in range.. Surely it's how we feel that matters to hell with bloods I've said this time and time again to my gp what level might be good for you may not necessarily be good for me we're all different and to umbrella everyone the same is sheer insanity Im fighting everyday with my symptoms and my gp/endo it's not right.. 😩😩😩
All GP’s will say it is normal if it is just above or just on the line of normal in their range schedule. I know it can be extremely frustrating, but you really need to see an endocrinologist as they have more knowledge than a GP.
Feel free to look at my profile. I feel your pain with the hair loss. When I mentioned to my endocrinologist that I had lost a lot of hair he asked me if I had an bald patches!!! OMG! Give me strength! Anyway, positive vibes coming your way. x
My answer has always been: A size 5 shoe is normal for a woman and a size 6 shoe is normal for a woman, but you would not expect to put a size 5 shoe on a woman who takes size 6. How did they get to ranges - because some normal people were at a different number than some other normal people. Well perhaps the normal you are is not normal for you. It seems unfortunately hair that is lost does not seem to come back (if my sister and I are anything to go by), but what we do have seems to have thickened up. My sister is on 175mcg levothyroxine and I am on 100mcg levothyroxine and 50 mcg of T3
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