A few years ago, my thyroid results were looking a lot better but NHS GP over the last 2 years has told me to reduce my dosage twice (because of the 'risks' of overtreatment). I'm now on 100mcg levothyroxine (75mcg supplied by GP and topped up by myself) and 25mcg liothyronine (self-sourced). I now don't feel like this is enough but the GP wants to reduce me further because of the ongoing suppressed TSH and says that even though my levels have been around the same for a while, it can take a while for me to feel the effects of over-medicating. My main symptom is utter exhaustion and although I now have iron deficiency anaemia which has been worsening over the last year, they still feel like my symptoms can't be the anaemia and must be from over-medicating my thyroid.
Thriva Results - May 2023:
Folate 7.6 (8.83 - 60.8 nmol/L)
Ferritin 26.0 (30.0 - 150.0 ug/L)
Iron 11.3 (10.0 - 30.0 umol/L)
Total ironbinding capacity (TIBC) 69.0 (45.0 - 81.0 umol/L)
Transferrin saturation 16.0 (25.0 - 45.0 %)
Unsaturated iron binding capacity (UIBC) 58.1 (13.0 - 56.0 umol/L)
B12 - 999 ng/L (187-883) - on vitamin B12 injections 12 weekly due to gastric bypass
Folate - 3.8 ug/L (3.1 - 20.5)
HBA1C - 39 mmol/mol (20-41)
So the GP says today that my significant fatigue, lack of energy, headaches, dizziness (especially upon standing from lying down), cold all the time, cannot be from my iron deficiency as it's very very unlikely to cause symptoms at that level (especially considering they think the ferritin level is 'normal'.) They believe that I'm over-medicating with my T4/T3 and that is likely to be the cause of why I feel so unwell so want to reduce further.
For my anaemia, I got referred to haematology first who said they saw no issues, then referred to gastroenterology who said my levels weren't that bad and the levels certainly wouldn't be causing such symptoms and to see in June 24 to see if they go down any further. I was taking 6 ferrous fumerate tablets a day and the consultant said to take 3 and see how I go in 3 months. I asked if 6 wasn't raising my iron, why would 3? But no real answer except 6 is too many. I had a gastric bypass done in 2018 and my weight has been stable for a few years now.
Every time I go in with any issue, they see the TSH and it's like an 'aha, that's the problem' and they just don't look too closely at anything else. I've been supplementing with iron, vitamin D, folic acid etc. but my levels are going lower which I think is likely due to long-term effects of having a gastric bypass. I feel like lowering my Levo/Lio any more won't help as I feel it's too low anyway. I don't have an up to date T3 level as I haven't been able to do a private test for a while.
Everywhere I look online seems to confirm that long-term suppression of TSH is bad, but for me personally, when my T4/T3 levels were higher and TSH still suppressed, I felt better and I feel like my symptoms are now due to anaemia, low folate/Vitamin D and lower than ideal thyroid medication.
I have no idea how to get the GP to understand that my TSH will always be suppressed whilst on any dosage of T3 medication and that lowering it is not the answer?
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Louise1610
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I’ll be the first to reply quickly regards to your Ferritin.
Speaking from experience- your ferritin at that level can absolutely be causing symptoms of its own.
And can you request a full iron panel which in addition to ferritin includes iron, TIBC, UIBC, transferrin saturation percent and high sensitivity CRP.
Please share exactly what “6 pills” you are taking - it might be true that 6 is too much, but we need more info to say.
There will be advice also on Folate and D - which both also need to come up, as well as opinions on your thyroid numbers.
But in the meantime - you’ve got a job to do with that ferritin as well!
The GP did those tests in January so didn't seem to want to do them again and just did the ferritin and FBC in March:
Jan 24:
Serum iron - 8 (9-30.4)
Serum transferrin - 3.8 ug/L (2-3.2)
TIBC - 100 umol/L (no range)
Transferrin saturation index - 8% (15.40%)
CRP level - 0.30 mg/L (0-5)
For the 6 pills, my history with supplementation was that around 2 years ago, I'd been taking heme iron tablets and the GP said I should be taking 3 ferrous fumerate 210mg a day. Then within the last year, gastroenterology said to double that to 6 x ferrous fumerate 210mg (which a useful GP said they don't really advise more than 1 now as you don't tend to absorb more than 1 anyway if you can absorb them properly!). Then I spoke to gastroenterology again this year and they refused to accept that a different consultant in their department had told me to double my dosage and said reduce back to 3 and they'll see in 3 months. I'm not sure how much I'm actually absorbing of any of the supplements and how much dosage I would have to take to overcome the absorption issue (but also I can't really afford super high doses of everything either, so I'm a bit stuck!)
You have iron deficiency indicated by every aspect of those results.
Additionally, one of those measures (saturation percent) shows your iron is too low for your body to be making good use of the T3 you have.
Can you clarify - at the point of the test what iron supplements/dosing were you taking and for how long had you been taking it, and how many days before the test did you stop?
Before the blood test, I stop iron tablets 5 days before, plus my thyroid ones, I take my full T4 dose and half T3 dose the morning before (about 24 hours before), then leave my 2nd half of T3 until about 10-12 hours before the blood test and been on a dose of 6 ferrous fumerate for more than 6 months, then dropped down to 3 in early Feb after the last gastro appointment.
Very quickly - I think many people would recco an iron infusion. Me, personally, am choosing a very precise, calculated heme iron supplement approach with Three Arrows Heme.
Your iron should be 55-70% through range. You are zero! And at that level of supplements, iron is quick moving enough that that’s really really low. If you are taking the iron properly, then yes your absorption is terrible.
Can I ask - are you staying away from calcium when taking your iron? Are you taking any vitamin C with it?
Also, non-heme only absorbs at 1/3 rate of heme iron. If you do want to give supplements one more go , could you consider Three Arrows heme iron? Or are you a vegetarian? Or will it be cost prohibitive?
I don’t have any guidance on iron infusions. My ferritin has been in single digits (it was 7!), but my iron has bounced around more. If I were you, I would give heme supplements a try, and keep iron infusion on my “wait and see” list. Well, that’s actually what I am doing right now : )
I take 1000mg vitamin c with the iron and I take them about 3-4 hours after my thyroid meds and breakfast, so no calcium at the same time. I've seen that heme iron and did start it a few years back, but with all of the other supplements, it was costing too much, plus the GP said non-heme should be enough, so I stopped the heme iron as I was struggling to pay for everything, including my own blood tests as the GP never wanted to test everything I asked for (T3, full iron panel, etc.).
What should I do about my thyroid meds being reduced? NHS GP prescribes 75mcg currently and I source extra to make it to 100mcg, but they're wanting to reduce to 50mcg, should I just take more myself again to keep it where it is until my other issues are resolved? I know I need to do a full thyroid panel at some point soon to see the T3 level, but I'm not convinced about reducing at this point!
Also, you need to supplement Folate towards top of range, and D needs to get back closer to 100.
I will come back later if someone else doesn’t give the details on the type of folate you need (ie, it is NOT folic acid…) and a calculator to see how to adjust your D dosing, AND why you need about 100 mcg of Vitamin MK-7 with the D.
Sorry for piecemeal responses from me - busy day : )
But regards to your Levo/lio, you need a FT3 update to go along with that recent T4 12.8 (9-19)
Yes, that’s low, and most of us feel well with. It’s FT4 and FT3 in top half/top quadrant in range.
So one would say do not decrease Levo. 50 mcg Levo is nuts : ) BUT, on 25 Lio - you should test for T3. That’s not a tiny amount and it really does help make better decisions.
I have read and re-scanned your post. Issue is that every one of these test results:
FT4, FT3, b12, D3, ferritin (and full panel), and folate
will all have a 2 way impact. Increasing ferritin and folate will impact your Ts even if your Levo/Lio stay the same.
Since we recco only changing one thing at a time and taking 6-8 weeks for Levo/Lio changes and a couple/few weeks when adding/increasing vitamins, you need to prioritize which order to do things in.
You know your vitamins are suboptimal. You could easily decide to tackle those. And work in your Levo/Lio strategy concurrent for when you are ready to change OR stand your ground.
Again - I’m bouncing around on lots of things today, so might have missed some detail.
Let me know what you think, and we can also try to tag some others here to weigh in to fine tune.
edit: so I think I would say stand your ground on your Levo/lio. If you did that, what dose would you be on (and how long have you been on that steady dose)
That's ok - I appreciate your help and this isn't a quick emergency fix anyway, so I won't be going anywhere fast!
I've stayed on 100mcg levo and 25 lio for about a year now (as I reduced from 125mcg to try and 'comply' with the GP instruction of reducing last time, although the GP thought I was on 100 then and moved down to 75, so now wants to prescribe 50mcg, which I would have to top up to 100mcg to remain on my current dose). My thyroid levels were optimal when I was on 125mcg levo and 25 lio.
The gastroenterologist said that if my iron levels were still going down by June 24, then he would sort out iron infusions, so I'm hoping that an infusion would push me out of the red zone and then I can think about heme iron again to try and keep it higher as well as increasing my other dosages for other vitamins. I'm not super keen to tweak my thyroid meds until those other ones are much better and stable because, as you say, I've no idea what my thyroid labs will look like once those other levels are sorted.
Out of interest, what's the worst a GP can do if they find out that you're self-treating with thyroid medication? Can they refuse to treat you for everything, including thyroid? If they're adamant that I'm over-medicated for thyroid and that's the cause of my symptoms (not anaemia and other vitamins), then can they refuse to do anything about iron/vitamin D/folate etc. if I keep treating myself with T4/T3?
I’m hopeful for your iron infusion tbh. In my opinion - for your iron to stay so low on 6 pills… my iron for example does respond quickly up and down in a 6 week period (ferritin of course moves like molasses if at all). If I were you I would keep that iron low, drop your supplements and get that horrible iron panel in June and get your transfusion. Just my opinion.
Out of interest, what's the worst a GP can do if they find out that you're self-treating with thyroid medication? Can they refuse to treat you for everything, including thyroid? If they're adamant that I'm over-medicated for thyroid and that's the cause of my symptoms (not anaemia and other vitamins), then can they refuse to do anything about iron/vitamin D/folate etc. if I keep treating myself with T4/T3?
I am in the US… need to get the expert NHS wranglers to weigh in! I’ve read lots in this board about people being happily surprised and total disasters, depending on the GP, the endo, your locations, etc.
If no one replies here in a day or so, you might consider a new post with your how to navigate the NHS question.
Regardless of what the GP wants to prescribe, I think I will fill in the gap to make sure I keep on the same dose for now until things are a bit more sorted, especially with my iron. I just don't know how to get them away from staring solely at my TSH without caring what my T4/T3 levels are, but hopefully someone in the UK can help with that one fingers also crossed for June and the infusion!
I would repeat to the g.p. what somebody said above. You don't want to change too many things at once and you want the iron situation sorting out first.
That is a sensible approach that I would not think they can argue with even if they are blaming your thyroid for everything.
They can refuse to treat you but hopefully you are not at that point. You could move practices but that is no guarantee of success either if the next lot are that stupid too.
I have always had suppressed TSH too on whatever dose of NDT or T3 but accept that it is not relevant once you are treated. It does not cause any symptom so the right iron level much more likely to help.
Thank you it does make sense to try and focus on the worst first and I think that's the iron! Although it is difficult when they say my ferritin is normal and that I'm only very slightly anaemic though. I've told them many times that, as per official NICE and WHO guidelines, it's really not normal and not just 'slightly low', but they are beholden to the normal ranges they see on their NHS computer and I presume those ranges are determined by the local CCG (as the 'normal' ranges seem to be different depending on the area of the UK). I will still say to them that I'd like to see the iron dealt with first with my next appointment being in June and see if I can postpone them from focusing on my thyroid stuff until after then! They don't know I'm self-treating beyond what they prescribe at this point and I've been trying to redirect them to more important things so far, so I don't think I'm at point of refusal, but I'm sure I have a red mark against my name for not obeying the law of the GP and being challenging!!
I think you're right. I think TSH can be useful to help initial diagnosis, but it's more about the T4/T3 levels when you're on treatment!
I don't think very many of your results are "normal".
So the GP says today that my significant fatigue, lack of energy, headaches, dizziness (especially upon standing from lying down), cold all the time, cannot be from my iron deficiency as it's very very unlikely to cause symptoms at that level (especially considering they think the ferritin level is 'normal'.)
I think you need a new doctor. The one you have has clearly never been low in iron themselves and doesn't realise that your results are appalling and are responsible for making you feel very unwell.
Most recent blood results March 2024:
FBC - all lowering in last year:
- Haemoglobin estimation 106 g/L (115-160)
- Haematocrit 0.341 (0.37-0.47)
- MCV 79.3 (78-100)
- MCH 24.7 (27-32)
- MCHC 311 (310-350)
- Platelet count 251 (140-450)
- Red blood cell distribution width 15.1% (11-16)
Ferritin - 11 ug/L (10-204)
TSH 0.01 (0.35-4.94)
T4 12.8 (9-19)
Vitamin D - 46.6 nmol/L (>50)
B12 - 999 ng/L (187-883) - on vitamin B12 injections 12 weekly due to gastric bypass
It shows how the World Health Organisation defines anaemia. See Table 1, Page 3 of the document.
It defines anaemia in non-pregnant women as being a haemoglobin result under 120 g/L. It also gives levels of anaemia defined as Mild, Moderate and Severe. Your level of 106 g/L is within the moderate range.
Note under the table it says :
"Mild" [referring to mild anaemia] is a misnomer: iron deficiency is already advanced by the time anaemia is detected. The deficiency has consequences even when no anaemia is clinically apparent.
Haematocrit (also known as PCV - Packed Cell Volume)
This result can be measured directly or calculated from other test results. Haematocrit is low in iron-deficiency anaemia, as yours is.
MCV - Mean Cell (or Corpuscular) Volume
This result gives you the average size of your Red Blood Cells. Your result is low in range. This is indicative of iron deficiency anaemia. If MCV is high in range or over the range this is indicative of low Vitamin B12 and/or low Folate. People who have low Iron and/or low Ferritin PLUS low Vitamin B12 and/or low Folate could have MCV anywhere in the range and it can't be relied upon to diagnose anaemia in those cases.
[MCV is] Increased with B12 and Folate deficiency, liver disease, underactive thyroid, pregnancy, alcohol excess, some bone marrow disorders; decreased with iron deficiency, longstanding inflammatory disorders and thalassaemia
If your B12 gets low between injections it is recommended that you boost your B12 for a week before increasing folate.
HbA1C
Since your level of HbA1C is in range it indicates that you aren't diabetic. If your level goes above 41 this means you are pre-diabetic. A level above 48 is diabetic.
To treat iron deficiency anaemia you need more iron. Iron can come in various forms.
In view of how anaemic you are you would benefit from an iron transfusion, and it would improve everything iron-related much quicker than any other method. The NHS should agree to do that for you but since you've already been denied an iron prescription (imagine me rolling my eyes here!) I suspect you may struggle to get approved for an iron infusion.
They can be done privately in the UK. There are a few iron clinics dotted around England, one somewhere in Scotland (I think), but none that I can remember in Wales or Northern Ireland.
Here's a private clinic from London that will give you some ideas of what is involved, although it would probably be cheaper outside London :
Other treatments for raising iron include using iron salts. Note that doctors prescribe iron salts but they can also be bought in the UK, in pharmacies, without a prescription, with the pharmacist's permission. These iron salts are ferrous fumarate, ferrous sulfate, and ferrous gluconate. These types of iron supplement are well known for being poorly tolerated, particularly ferrous sulfate.
When I was taking iron salts I managed to tolerate Ferrous Fumarate 210mg, but only when taken with food. I didn't absorb them well, but I got their eventually. I couldn't tolerate Ferrous Sulfate at all. I've never tried Ferrous Gluconate.
Iron salts should be taken with high dose vitamin C.
You've already had heme supplements brought to your attention. I think these work better than iron salts for many people on the forum. You would need to take them with vitamin C.
I forgot to say about your results that many of them will be difficult to raise because you've had a gastric bypass.
You are going to have to be really disciplined in remembering to take your supplements to keep your levels up. And try not to skimp on the doses of supplements you take.
Thank you for sending all of this information! I will have a read through the links you've sent as well and will work out an action plan. It may be that my bypass means I need quite a bit higher dosages than someone without gut issues, so will need to take this into consideration when I'm increasing my doses, but I do worry about the increase in cost, but I have little choice!
I do regret having the gastric bypass but after multiple years of various GPs constantly telling me that I would feel so much better if only I lost weight (instead of treating my thyroid appropriately -to allow for normal methods of weight loss to be more successful!),I felt like it was my last resort to feeling better. I lost the weight and it made very little difference to my situation and wasn't until I'd sorted my thyroid medication privately that I started to feel better! And now the long-term effects of the bypass cause me more issues! And this is why I try not to take GP advice at face value, but I struggle when it's the same case with 99% of GPs you see as it makes you question your sanity and whether they are collectively right! I know it's not the case, but it feels like family members or work don't understand why you don't trust what the doctors say and don't just put up and shut up when the doctor says they see nothing wrong and you are normal!
Spoken to the latest GP this morning who says that my TSH has been suppressed for far too long now (since 2021 when I started NDT and then T4/T3 because NDT was too cost-prohibitive) and my T4 level is normal, so I am therefore being overmedicated and he has to reduce my levothyroxine, because that's what the 'guidelines' tell him. He thinks I'm on 75mcg levothyroxine (even though I told him again that I was on T3 as well) and says that I should now take 50mcg and that I shouldn't know for definite that taking 50 mcg instead will make any difference to my T4/T3 levels and that I should just try it. I said that if they're on the lower side now, then it's only going to get lower, but he thinks it'll likely make no difference at all and if the TSH shoots up then we can discuss again in 3 months time.
I said that my symptoms are likely due to the iron deficiency anaemia, low folate and vitamin D and not my thyroid being overmedicated, but he said, well those are all normal. I said clearly a couple of times that I don't want to start messing around with my thyroid medication whilst I have other issues that are in process of being sorted. He said you have slight anaemia but your iron level is just low, not deficient at 11 because the normal range is 10-290. I said iron deficiency is ferritin below 30 according to NICE/WHO guidelines. All he said was, well why don't you also follow the guidelines for thyroid then as well, then quickly proceeded to say he will reduce to 50mcg, retest in 3 months, said bye and put the phone down.
My appointment at the gastroenterology clinic is start of June for my iron deficiency (2 months away still), but I'm really not sure what to do about my thyroid medication. Should I just reduce and see what happens, even though I already feel terrible and everything else is likely to get worse over the next 2 months, just so that my TSH shoots up enough for him to leave me alone? Usually I would be able to avoid scrutiny because I didn't need any other help from the doctors, but with my anaemia, they've refocused on my thyroid and are letting my other things get much worse first. I don't think changing GP will help as I seem to be getting the same opinion every time. I feel like I'm constantly losing every battle with the NHS and I'm struggling to keep going when I'm always being told that I'm wrong and it's so expensive to self-treat. (I know I'm not wrong, but I work full-time and I am concerned that my symptoms are significantly affecting my work and if my work ever asks the doctors for an opinion or a report, it'll look like I'm actually fine!). Why do we have to fight so much just to feel well? Do I really have to be half-dead before they agree to treat things?
If more recent studies (albeit not many of them) are suggesting that a suppressed TSH with 'normal' T4/T3 levels whilst on thyroid treatment isn't the massive issue that was once thought, why is this not translating into the NHS guidelines? Why are different Clinical Commissioning Group's 'normal' ranges for blood tests different all around the UK? Is it actually due to the CCG deciding what to treat based on cost?
FallingInReverse humanbean - as above, I'm not 100% sure what to do about my thyroid medication. I'm still taking 100mcg T4 and 25mcg T3, but the GP has reduced my prescription of T4 to 50mcg, so I'm topping my T4 up to my current dose with my own supply. What should I do before the next thyroid blood test as the TSH with those doses won't come up unless I drop the T3 for at least a few weeks to a month? I know that I need to do a private blood test with TSH/T4/T3 to see where my levels are now so I'm thinking about doing the Monitor My Health one that is pretty cheap.
I've not heard about the ability to refuse permission to reduce my levo dose, although the impression I've had in the past is that I've really got no choice as it's the doctor's right to decide whether to prescribe or not as it's their liability. What I say doesn't matter. Usually I tend to get told what they want to do and even if I'm unhappy about it, they say they're 'following the guidelines and they have a duty of care' and that's the end of it. Because the national guidelines say that TSH shouldn't be suppressed and the GP doesn't take T4 or T3 levels into consideration , they just reduce and reduce to bring the TSH up. I am quite concerned about how much I'd need to reduce my medication to even bring my TSH up slightly and I think it'd require stopping T3 altogether for an unknown amount of time (which I know will cause horrendous side effects as my current dose of 100mcg levo and 25mcg lio hasn't gotten my T4/T3 levels where they need to be anyway!)
But this is a frequent topic of conversation here.
Yes, GPs consistently under and mis treat thyroid patients.
It is often a battle - sometimes the GP isn’t following policy and sometimes they are following policy that makes us more ill.
This board helps share experience in advocating for oneself in all these challenging treatment situations and flagging things in NHS policy to help support.
See pinned post here for example when it comes to TSH:
You may also want to start a new post - no one else will see these replies anymore : )
I suggest you continue to read current posts and search older posts on this forum also.
What you are experiencing is all too common. None of it is easy. But there are thousands of fellow patients on this forum making their own individual way as best as they can.
With regard to "patient rights" in the NHS I'm not the person to ask. I struggle to get treatment from doctors for anything, just like so many others. I test and treat my own vitamins and minerals, and also test and treat my own thyroid. Unless I thought I was in danger of losing my life I wouldn't go and see a doctor or hospital with something invisible/internal - and even then I would not be optimistic of a good outcome. I would go to a doctor or hospital for something visible if I couldn't treat it myself (for example, if I needed stitches or an x-ray). But even then I wouldn't expect to be treated well.
For rights to treatment and not being forced to reduce dose the best people to ask are probably :
helvella
SlowDragon
radd
TiggerMe
I'm sure I've missed out half a dozen others but my brain has gone blank.
There may be different documents on the subject available on the web depending on which part of the UK you live in. I googled "patient rights in the NHS" and got quite a few links back for different parts of the UK.
...
Regarding your serious iron/ferritin problem, did you know that you can take iron salts like ferrous fumarate 210mg (FF) at the same time as you take heme iron supplements?
Like you I struggle to raise my iron and ferritin when it drops but your problem is much worse than mine. I spent most of my life with low iron and ferritin. When I was in my 50s I discovered that I could buy FF (one of the iron salts that doctors prescribe - I can't tolerate ferrous sulfate) from pharmacies without a prescription. I immediately started treating my own iron, and testing an iron panel twice a year. The last box of 84 tablets I bought cost me about £7 I think. There are other iron salts available but they come in boxes with only 28 tablets - I don't know why - and probably cost more per tablet than the FF.
I think your best chance of success is getting an iron infusion. The problem is that when your levels have been seriously low for a long time results from an iron infusion can drop quickly afterwards. Some people have had iron infusions repeatedly over months and still have low levels, so there are no guarantees.
When my iron was at disastrous levels I took FF for nearly two years to get my ferritin to mid-range. My serum iron was still very low. I took iron at a maintenance dose for five years after that to keep my ferritin at mid range. Then suddenly my serum iron started to rise. Once that was at a level I was happy with I stopped supplementing.
I think that taking six tablets of ferrous fumarate is probably not going to work. If people take lots of iron the body stops absorbing it. The reasons why are discussed here :
It has a slightly different (and better, in my opinion) testing protocol to the original research paper I was writing about in the Healthunlocked link above.
...
How was your gastric bypass carried out? I know that sometimes part of the stomach is stitched up and "excess" is cut off. But sometimes the surgery can be done in such a way that it is reversible. Is there a chance that could happen for you? I don't know how big you were before the surgery but your extra weight at that time may have been caused by your thyroid condition and poor nutrients.
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