Hello and thank you for reading my post (it will be long). I have Hashimoto’s. Been on Levo plus T3 since 2018. Still not great but better than on Levo only.
Was taking 75mcg levo plus 10mcg (5,5) T3. My best levels were: TSH 0.03 (0.55-4.72). FT4 15.7 (10-18.7) and FT3 5.8 (3.5-6.5) March 2019. We then moved home (nearer my family) and my levels dropped. Initially I was extremely fatigued/brain fog etc and blamed the move. But during 2020 my migraines got more frequent and more severe and my home blood tests showed my FT4 had dropped low. Spoke to a random GP on phone (sept 2020) he checked nothing but prescribed propranolol. They are still in my drawer. I upped my levo a tiny bit and the debilitating migraines started to calm. I wrote to my proper GP who agreed I should up my Levo to 100 x 5 days and 75 x 2. Then did bloods in March 2020: TSH 0.02 (.27-4.2). FT4 14.8 (11.2-20.2). FT3 5.5 (3.2-6.8)
She also suggested I see my endo (which is great when she’s not paying 🤨).
Saw private endo, he agreed on adding 5mcg of T3 (I still struggled with doing much). I actually have only added 2.5mcg (5, 2.5, 5). NHS bloods taken 13/12/21: TSH <0.01 (.27-4.2). FT4 14.4 (11.2-20.2). FT3 5.9 (3.2-6.8)
Endo emailed today…………. Thanks for sending your results. Your TSH is undetectable and this is a concern because of later effects as I say on the heart and other things. I am afraid therefore that this means that you are getting too much thyroid hormone and I'm afraid it's not correct to say that there is plenty of room for increase. I agree that the TSH gets lowered with T3 but if the TSH is undetectable that is not good for you long-term.
I think that we should suggest decreasing your thyroxine but not your T3. I would decrease your thyroxine to 0.075 of a milligram five days a week and 0.1 two days a week.
If there are any queries please let us know and it would be wise to get your thyroid function tests measured in six weeks or so. (Pleasantries etc, blah blah blah)
I’m nervous about reducing my levo in case it causes my migraines to increase. Although if I add the small amount of T3 first, maybe it will be ok.
So, if you are still awake 🙏🏻 any advice would be greatly received. Should I: 1. Reduce my Levo? (And add the extra 2.5mcg of T3 that I held off?). 2. Carry on as I am and ignore endo completely? 3. Try and fudge my NHS blood results by maybe only taking half my meds for 48hrs before test? (I always have done in morning, fasting, with just water). 4. Find a new endo or try and get Thybon Henning without prescription (bit concerned about this option as don’t want to change brands)
I’m so frustrated that my TSH is so low when for some people it doesn’t seem to drop down as much. Honestly, they say don’t get over stressed as it’s bad for your Hashimoto’s, but battling for the correct meds is really stressful. I take 2 or 3 home blood tests throughout the year to keep an eye on everything. (VitD, folate, ferritin and B12 all good as I supplement as per recommendations on here). Dairy and soy free. Low gluten (found it difficult to be GF, but will try again). Even grow my own fruit and veg. No alcohol (intolerant).
Thank you again for your time ☺️
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Lovecake
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Assuming you did test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Thank for your reply SD.I did add a little more Levo, but I don't feel great. It's like when I was on Levo only. Started feeling over medicated when I wasn't and my energy dropped out for several days if I'd been busy. (that's not even very busy). I don't go out in the evenings. I don't get up early, I have to rest too often and I'm only 56!
My head feels "clear" when I have the T3.
I use the percentage calculator that Helvetta (think that's the name) posted, but will check that new one. I have a spreadsheet going for my results.
Same brand every time. Haven't tried splitting Levo, will try breaking the 100mcg. Don't know if they are like the Thybon.
Before adding T3 I was on 100 x 5 and 75 x 2. Reduced to 75 x 7 and added 10mcg T3 (as per march 2019 results). Then levels started dropping as mentioned.
Thanks for the suggestion. I have Accord (via Boots). I assume not lactose free. But I thought being dairy free doesn’t mean all lactose? I’m not lactose intolerant. Did an intolerance test a while back, said slightly dairy intolerant. Been off dairy before diagnosis of Hashimoto’s. Soy gives me migraines within minutes so that’s an easy one to avoid because of the consequences.
Thank you once again.No, they don’t even ask about being dairy or soy free. Might have mentioned gluten. They did check the vits and minerals and other stuff initially.
I could try for the liquid levo. Maybe the endo would ask my doctor to prescribe it? Or would I have to pay for it first to see if it suits me?
You could email endocrinologist. Point out you have (by necessity been lactose free) since diagnosis……yet only just realised that your current levothyroxine has lactose in it. Can endocrinologist request GP prescribe Lactose free tablets
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
Will try this approach. It might be why I can’t take my Levo when I have the start of a migraine (makes it worse). I have to delay taking it until my migraine medication has started working.
Got some, read the instructions and side effects, left them in the drawer.I take Imigran (the original sumatriptan as far as I’m aware) at the start of a bad head. Nothing else works. Can sometimes hold it off with ice packs and sleeping but not often.
When I took the generic sumatriptan I was violently sick for 7 hrs and had a worse migraine. The GP at the time wanted me to take anti sickness tablets with it. Stopped me throwing up for 2 hrs then it started again. Told him id pay for the Imigran if he wouldn’t prescribe them. He showed me the RRP - Imigran £27 for 6 tablets, generic was about £1 for 12. The pharmacist later told me they only paid 50p for the 6 Imigran.
Been fighting for correct medication for years now all because of price and misinformation. 🙁
Sorry to cut in here. My daughter gets migraines and takes migraine tablets (over the counter), not on thyroid medicine but I believe she could possibly have problems, was told it was fibromyalgia. Anyway, what is wrong please with propranolol ? thanks.
thank you. I have tried to tell her, but she won't do it. She had terrible swelling of hands and joints and pains in joints, seems to have subsided for about a year. She was also B12 deficient but has always taken tablets, which is what the gp told her to do 10 years ago, even though her hair was falling out. That seems to have stablised now and her hair is thick again. I will send myself that information in an email. thanks
Just ask Endo ‘do you have evidence that if TSH is suppressed when both hormone levels are in range then this poses a risk to heart and bone health’ the answer is no. Join Thyroid Patients Canada on FB and search the topics on there. Lots of references and in depth explanation.
It’s a great group. Some of the answers are very complex and take time to read and understand. My TSH has been suppressed for 16 years. I get fed up of arguing and explaining to various doctors and Endos.
Yes, I’m fed up with the arguing and explaining. I just haven’t got the energy. I feel that being how I am and getting on with things is better than sitting in a chair all day getting muscle waste and depressed. Then they could prescribe antidepressants and I could sit in the chair but feel happy about it………When you say suppressed, do you mean under 0.01 / undetectable too?
My NHS has been 0.02 for ages. Endo was ok with that.Now it’s <0.01 I’m on more thyroid medication but my levels are lower than March 2019 when my TSH was 0.03 all very confusing.
My TSH has been suppressed for 25 years. I have seen an endo twice and both times they have panicked about it. One persisted in saying that my treatment has been wrong since my thyroidectomy and was not convinced that having thyroid cancer was enough to warrant the operation. I was fortunate that when I had the thyroidectomy, a friend worked at the Mayo Clinic in the US and her boss looked over my results and gave me great advice, which included not taking irradiation.
I'm afraid that I have no sage advice to offer. I did manage to come to an agreement with the endo that he would not interfere with my drug regime, as I was unable to function on the lower dose he thinks is enough for me. Fortunately, I am unable to see my GP (4 doctors, 22000 patients and counting) so I haven't had to have a fight with them about this in the last 2 years.
Thank you for your reply. Are you on T4 medication, some T3 or NDT?If I could get the Thybon Henning T3 without a private prescription here in the UK then I wouldn’t be trying to placate my endo.
I'm on 125mg of levo every day. I was dropped down to 100 every day, but I could barely stay awake, all my nails were splitting, my hair was falling out more than ever and I had the attention span of a gnat. Even alternating made very little difference. So he gave in with bad grace (I may have mentioned unprofessional conduct and complete ignorance of the condition he was treating...) and said I can stay on the 125. I suspect the GP will have a different opinion, but I cannot get an appointment to speak to one, so I doubt that things will change.
Honestly! You couldn’t make it up! How dreadful for you.I had a similar thing way back when on 100mcg, my doctor thought it was too high (TSH was under the ref range). I dropped to 75mcg and had a dreadful Christmas. Nearly fell asleep at the dinner table on Boxing Day when my children came home. Took me 3 days to clear/wash up. I ended up on 100 x 5 and 75 x 2 days. But ultimately adding the T3 helped the most. It’s just that my TSH dropped to 0.04 when first on combi T4/T3 and hasn’t been higher since. Seemed to be accepted till I added a little more T3 and it’s dropped again.
I’m not concerned, but I just need to sort the endo. I’ll do a few changes, see if the TSH moves - he seems to like it if there’s even 0.01 of change. And we continue our fight to feel good and have the energy to live our lives anywhere near “normal”.
I now feel if they leave me alone then I’m happier. I do home blood tests to keep an eye on things. I hope you get to stay on the dose you feel better on ☺️
Thanks. Since our local MSP has now brought the Health Secretary into the row over how bad our surgery has become, I don't think I'm in any danger of the GP interfering with my dose. I'm supposed to have an annual review, but I have to join the queue on the phones to make an appointment, and they only give out appointments for that day. No way I am going to be able to get one, so there won't be any review this year - again.🤷♀️
Just a question, perhaps you might need to look at HRT side of things? Unless you have already? Menopause can wreak havoc and cause similar symptoms to hypothyroidism. I found that anyway, also low estrogen can cause migraines. Just putting it out there.
Thanks BarbSA, I had to have a full hysterectomy at the age of 44 due to a growth. Been on HRT ever since. The tablets gave me constant migraines, the patches are better. I’ve done a diary for years on blood results/how I feel/what I eat/sleep etc. I definitely know that when my thyroid levels are too low (for me) then I get worse migraines that confine me to bed.
My mum doesn’t do well on tablets either. She can’t even take paracetamol without getting a bad reaction.
My personal opinion would be to reduce your Levo and increase your T3 to 5mcg and not hold back. 2.5mcg is really low dose. I take 75mcg Levothyroxine which I split twice a day. I also take 5mcg T3 twice a day with 8 hrs apart.
It’s a lot about keeping your levels just within range if you can and being methodical about your daily intake of thyroid medications and vitamins.
Thank you McPammy, sound advice. I’m going to try and split my Levo. Might even try and get the liquid form as suggested by SlowDragon.I was on 75mcg levo and 10mcg T3 (5+5). Then my FT4 level dropped low so I added a little more Levo. Things improved a bit, then added the additional 2.5mcg T3. As above, my levels are not high but my TSH has dropped.
I don’t know why. I had higher FT4 and FT3 levels 3 years ago with a TSH of 0.03. My endo was ok with that. But now he’s fussing. Doesn’t seem to want the TSH to be completely suppressed. 🤦🏻♀️
My NHS Endo is strict on not being suppressed whilst on T3. I’m on combined T3 and liquid Levothyroxine. So I totally understand where you’re coming from. I’ve managed to keep my TSH just within the range. Out of 18 blood tests over 2 years it’s only been suppressed twice, in Nov last year it was 0.64(0.35-5.50) so just in. I must admit I feel absolutely fabulous since I started T3 plus liquid Levothyroxine. Prior I was in a state and even hospitalised 3 times as i kept collapsing. Now I just feel many years younger. Keep going. Keep trying to find your optimal dose!
Thank you for your reply.I’m encouraged by the liquid levothyroxine.
I have a feeling I’ll end up paying for it though as you have no thyroid and obviously fair worse than me on the tablets.
Although I could remind them that vitD tablets don’t work, only the liquid capsules or spray have an effect on my level. Plus I can’t take folic acid tablets as they give me a bad head.
I’m confused by my results at present because I’m taking more, my TSH is a teeny bit lower, but my free levels are also lower. I feel somewhat ok, occasionally good, but would like to increase my doses. I’m going to have a change round to some of the suggestions of this post and see if anything clicks. Feeling younger would be great, very often my 83 year old mum gets out and about more than me 👵🏻
You shouldn’t need to pay for your liquid Levothyroxine. I get mine through my GP on repeat prescription. There was no issue getting it either. I do believe it is more expensive than tablet form though. Great thing about it being liquid is that you can tailor your dose more specific to your needs far easier than tablet form. You can draw ‘any’ amount in the syringe. Tablets normally come no lower than 25mcg but I do believe there is a 12.5mcg tablet but that’s made by Teva and lots don’t do well on Teva. I have Hashimotos and I’m a very poor converter proven by blood tests and I had a positive DIO2 gene test through Regenerus Laboratories also.
Thank you. I’m going to ask the endo to write to the GP for a trial of liquid levothyroxine. Seeing as I already pay for my consultations and T3 they might agree to that without question. He will probably do this as he wants me to lower my dose and I’ll tell him that through my research this might be the best way for me.Unfortunately I can’t tell him that that my sources are the fantastic bunch of people on here 🙊
I wouldn't worry about what your TSH says...mines always around the 0 range. Go by how you feel. Thankfully I have a new doctor who takes the full thyroid panel into account and doesn't just focus on the TSH - I've heard that when you're taking meds that include 'T3' - your TSH tends to be ) or close too 0. I've had hashimotos since 1979 and the current trend among endos is....that the TSH is all that matters....like I said...its a trend and doesn't give you the complete picture.
Thank you for your reply.My endo didn’t seem to worry before. He even told a previous GP that a low TSH was fine. But he’s just decided he’s not happy at <0.01
If I can just get the TSH to not be < on the results he will be fine.
This trend is stressing me out - which in turn will make me more hypo plus give me more tension and migraines - so annoying when there are hundreds (if not thousands) of people who know that some people can be fine with a suppressed TSH.
You may find Riboflavin (Vitamin B2) will help a with the migraine. I was recommended this by a neuro at National Hospital for neurology, Queens Sq. dose between 100-400 mg- maintenance 100mg.
I find Solgar best and no soya version available.
I have no thyroid, take only T3 and my TSH is also non existent- been so many yrs. Had ablation for Afib almost 5 yrs ago and fine since. Afib was connected with PCOS.
Thank you Bellaowl I was recommended magnesium for migraines. It doesn’t help other than to sleep a little more soundly, plus goes with my vitD and k2.
I take a B-complex which includes B2, but only 14mg
Will certainly get some as you’ve suggested and give it a try.
I do feel that having no thyroid at all means you might be given some leeway on the TSH. (Might be wrong).
Yes on NHS. I had a problem with CCG about 4 yrs ago but sited that NICE recommends if there is no thyroid then T3 should be prescribed. My GP supported that and there hasn't been any issues since.
Hosp endo hasn’t prescribed and not supportive but I’ve been on it and stable since 1986 so doesn’t want to rock the boat.
If I get any Afib it has always been lack of potassium- I have IBS or rarely bad asthma bouts have set it off. But after ablation is stable.
Less than 100mg B2 is a waste of money. It can take a few weeks to really see/feel a difference. It colours urine yellow and the depth of the yellow, or clear, I’ve found is a good indicator as to how much the body is needing. Ie almost clear, the body has used it all; very bright yellow, too much.
When you take your blood test is important for TSH readings. Research that issue on-line. Basically you should not eat or take your meds before your test and the test should be as closet to first thing in the morning as you can arrange. Also, when you take your T4 and T3 makes a big difference. After much reading, it is recommended to take T4 one or two hours after you eat and right before you go to bed. T3 is not so picky, but I take mine at 5AM because if I don't I wake up later depressed. There is also some dissagreement regarding the impact of a low TSH on your heart and bones. One of my doctors said something to the effect, if you are concerned about that, get a bone density test and a heart health test once in a while. If all an endo does is look at TSH and then tell you what to do and then collect a lot of money, then I went into the wrong profession.
Thank you playtime2, I do get my bloods taken as you suggest.I currently take my T4 an hour before lunch with 5mcg T3. This is because if I wake with a bad head I can’t take Levo before my Imigran or I get a full on migraine. So lunchtime seemed to be a good time for me.
I take 2.5mcg T3 an hour before evening meal and 5mcg when I wake (approx 2-4am) in the night. This seems to give me a little more energy in the morning.
I’d have to alter the timing for taking magnesium if I took my Levo before bed, but it is doable.
SlowDragon’s suggestion of liquid Levothyroxine is something I’m definitely going to see if I can try.
I was thinking of getting a bone density test. This endo asked my nhs GP to do it 4 years ago but nothing came of it, so I expect I’ll have to pay.
I suppose the heart health test will need to be private too.
I only work very part time, haven’t been able to work lots of hours for a long time now. Maybe I should remind the endo of this and say that if he doesn’t keep my levels good I won’t be able to afford to pay him……………the job that you, the admin and many other wise people on here could do at half the cost.
I wish you well and maybe one day I can post something that is more positive reading for everyone. ☺️
Dear Lovecake, I have a suppressed TSH - has been for sometime. At the moment .005 - before .01. My private endo ( who I haven't seen recently) doesn't worry about it but takes it into account. He asked the NHS to refer me for a Heart Halter (?) test to see if there was any issues with AF. All came back fine. I havent got it right yet and vary in how I feel. I would feel more comfortable with a higher TSH only because then the anxiety of the GP would be less, but as you said, haven't seen a GP for years (covid). I think we are all struggling with getting the right dose to help symptoms without the hastle from the medics. My endo always says that the important measurement is T4 and T3 and as, in my case, they are only 50 - 60% though range then he is happy. I can't afford the private endo at the moment and so have to manage it myself.
Best wishes to you and I hope you find the answers you need. Susie
Thank you Susie, that is helpful information. Don’t you find it puzzling that some people can be on more meds, with higher FT4 and FT3 levels, but their TSH is an “acceptable” level? I am able to speak to a GP quite easily on this subject, the problem is they all seem to be under-informed and over scared. I try and avoid them as much as possible. I have no heart or bone issues. But I can see that I may have to have those tests done to keep them happy. I must admit I’ll be a bit miffed if I have to pay for them. I don’t have spare money either.
I’ll see what happens. I suppose if it takes ages (for whatever reason) then they can’t be too bothered about my very low TSH.
I’ve had many helpful replies and will be trying some of the suggestions over the next few weeks.
Dear Lovecake, I have been on Levothyroxine since my thyroidectomy in 2011. Never been well since, G.P. no help with my symptoms. Sent to an Endo in 2017, for persistent symptoms, who stated it was not an endocrinology problem try a menopausal specialist. Very dark days followed, in the end i had to retire from my chosen Profession. More dark days until I found Healthunlocked and I started to educate myself and challenge the G.P. Gut health deteriorated so bad I had my own private testing done which came back mainly Dairy and lots of other food stuffs. I was already gluten free at that point. Requested the liquid Levothyroxine, however my gp wrote to the endocrinology dept at nearest hospital and they would not allow, so I was put on Aristo 100mgs,before i was taking 112mgs, so I am very hypo at moment. just waiting on more private blood results, returning. My choice G.P only does tsh. This year i decided to source my own T3. and intend to start it on return of bloods. Since doing Private bloods over past two years, My TSH has always been 0.01 and have read lots of info stating not to worry about it, my G.P. seems to think it is fine for me ! I too had a Migraine during summer months last year after a week it started to worsen, Ive always had headaches but nothing like this, ended up hospitalized having all sorts of tests. Hospital gave me 300mgs of Asprin ( apparently new treatment for migraine ). I was reluctant to take but felt I had little choice at the time, It did ease, but what helped most was going to my Chiropractor who said a cervical vertebra had moved millimetres but enough to press on my vagus nerve. Thankfully never needed Asprin again.
I love reading all the posts on here and I have learned a lot reading yours so thanks to you and all the other posts. Going to request a heart test and dexa scan before starting my T3, However not sure how that will go down well with my G.P. ( nhs wont help me with my symptoms, and give me T3. I dont even ask them no more) I have to self medicate, to see if it will help. ( cant afford Private G.P. or Endo).
Best wishes to you I hope you find your answers and you do get your Liquid Levothyroxine.
Thank you for your message. I am saddened to read that you have gone through so much. My neighbours dog gets better treatment that us. (The dog has Cushings). I agree with you that this group has been an immensely important part of me being able to start to get well again.Don’t you just hate it when a doctor blames everything on the menopause? Only because they don’t want/can’t be bothered to investigate further.
Years ago my mum was told she wasn’t going through this, that and the other and they threw lots of nasty tablets at her. She ended up coming off them cold turkey, I can still see her on our settee now, shaking. With me holding her to try and make it stop. (I was 13) She had a nervous breakdown, put herself in the psych unit for a month and gradually got better on her own. She told the psychiatrist he was an idiot after he asked her what her sex life was like! (At that point she was a very thin 6stone lady). Anyway, I digress. My point is, we have to do it ourselves and having a lovely group of friends here that we can lean on is a massive help. (Mum is 84 and still doing well 🙂)
I wish you all the luck in the world and hope you do well on your T3. It has made a huge difference to my well-being and I hope I can always get it.
Thank-you Lovecake, I totally agree, we have to take care of ourselves. Not always easy when your body is sore and the brain is foggy. Upward and onward, and its certainly a challenge. However, I feel very lucky i found this group and very grateful for the support and knowledge I have gained. Otherwise I,m not sure where I would be. Looking forward, with a little apprehension, to trialling T3, and I know I,m not on my own if i run into difficulties. Thank you again for your lovely reply I wish both you and your mum good health and many blessings
As you have probably learned, introduce your T3 very slowly. I will look forward to a post from you telling us how you are getting on. You sound like a sensible person, so I’m sure you will get it right in the end.I’m not sure where I’ll be getting my T3 from in the future if my TSH won’t rise even a tiny bit when I reduce my Levo and the endo may decide they can’t treat me 🤷♀️ We’ll see.
Thanks Lovecake, I have taken a very long time to get to this point, just cause when i read I dont always absorb info. the first time. Have to extract and write it all down in my health diary. so I plan to go slow and steady with T3, and perhaps reduce T4, even though I feel Hypo already. ( may have to think about that one). Vitamins to be optimal. I hope by doing all this I have minimal worries.I would love to keep in touch and let you know, how I progress. I will share my source, but not sure if I,m allowed to do that here.
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