Migraines linked with Hypothyroid, and bad side... - Thyroid UK

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Migraines linked with Hypothyroid, and bad side effects from Levothyroxine?

CJG85 profile image
19 Replies

Hi,

I am 36 and not previously on any medications.

Back in April 2021 I started suffering from Chronic Migraines (I have suffered from migraines since I was 7-8 years old, but know my triggers and generally only suffer full attacks 2 or 3 times a year). I contacted my GP after I was suffering from 3+ migraines a week for more than a month, and my optician confirmed that there was nothing wrong with my eyesight that would be causing the migraines.

After blood tests my GP noted that I was hypothyroid. This did make sense as there is family history on both sides. Over the last few years I have struggled with weight gain, even though I am active and eat a healthy diet, and had been progressively feeling more exhausted. I had just attributed this to the covid situation and general stress/getting older. They also noted I was low in VIT B12, and Folic Acid.

I was started on 25mg/day Levothyroxine, and standard B12 and Folic Acid supplements. I was extremely relieved when after 2 weeks the migraines completely stopped. My GP guessed that, as one of my triggers for migraines is menstruation, the hormone inbalance from my thyroxine levels being low was triggering the migraines, although he wasn't sure this was definitely the case. As the migraines stopped I didn't push for any further investigation.

However, I did suffer from side effects. My hands and feet started swelling up after exercise and an itchy rash would appear up my arms every few days. I also felt more exhausted than I had before. My GP told me this was normal and things should settle down after 2-3 weeks.

After 6 weeks things weren't improving, so my GP decided to increase me from 25 to 50mg a day, and took me off all vitamin supplements. For the next month I found I was struggling with any physical activity (I would sit down and pass out for 2 hours after hoovering the house, and was sleeping 14+hours a day). The GP then did another round of blood tests and determined I was VIT-D deficient. He maintained me on 50mg a day, and put me on a 7 week vitamin D booster course (taken once a week) .

During those 7 weeks my health deteriorated. My hands and feet started swelling up after just doing a 10min walk to the shops, and I started to feel nauseous in the morning after taking the levothyroxine pill. This progressively got worse, to the point I was nauseous all day, and vomiting after eating unless I lay down without moving for hours. Standing up suddenly I would get dizzy, which didn't help with the nausea, and I was getting confused/dealing with brain fog.

I reported all this to my GP, who's response was to wait another 4 weeks for more blood tests, and then potentially increase my levothyroxine daily dosage again. At this point I asked for a referal letter so I could see an endocrinologist through my works private medical care as I didn't feel I could wait another month.

The endocrinologist immediately took me off levothyroxine. Over the next 2 weeks the nausea, vomiting and other side effects reduced and by 3 weeks had stopped completely. In parallel I had more blood tests and he ruled out any potentially issues with diabetes, addisons etc. I started to feel much happier, as I was finally able to exercise, eat without feeling sick, and felt like my brain was working again. Unfortunately, 4 weeks after coming off the levothyroxine the migraines started again, although so far they are not occuring as often as in April.

Last week I had another round of bloods, and the endocrinologist confirmed that I am definitely hypothyroid, but not extreme. He has recommended I start treatment with triiodothyrine (T3) to see if that works better for me. However this is not available through the NHS and is not covered by my private medical care. The prescription he has placed for me with an independent pharmacy came through today, and will cost me £850 for 1 months supply. I have balked at paying for this, as I can maybe cover for the first month but it isn't possible for me to maintain indefinitely.

Right now I feel much better. I still feel a bit lethargic and the weight gain is still an issue, but those are all things I was dealing with without ever thinking to go to my GP. It would be nice to have them addressed if treatment will help, but I can't face the nausea, fatigue and side effects I had while on the levothyroxine. My main concern is, once again, reducing the migraines.

I know this has been a long post, but I was wondering if:

1) anyone has had symptoms like mine while taking levothyroxine

2) if anyone has had similar issues with migraines being triggered when thier hormone levels were too low?

3) is £850/month a realistic cost for T3 treatment? And is there no way to get this under the NHS?

4)any other advice from people who have been dealing with hypothyroidism for a while

Many thanks,

C

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CaroleM-A profile image
CaroleM-A

I had migraines for years prior to finding out I’d had early menopause (38) so that might be worth checking out. But I also got migraines when I was given Teva thyroxine. It’s a brand that causes problems for lots of people. I also had vision disturbances, painful joints and balance problems with it too. Maybe check which brand you were on. Here are many posts on here about the side effects of Teva if that’s what you were on.

£850 per month for T3 is extortionate. I buy mine from Mexico and it’s around £30 for 100 25mcg tablets

CJG85 profile image
CJG85 in reply to CaroleM-A

Hi Carol, thanks for your response. The migraines actually stopped once I started on levothyroxine, so although I did have other issues start while on Thyroxine, that was something the Thyroxine seemed to improve. I'm not sure what brand of levothyroxine I was on. I started on 25mg tablets, but I don't have the packet anymore as I finished the 2 packets months ago. I do know the packet was different to the 50mg tablets I was then prescribed. However these were prescribed through the NHS and the only branding on the 50mg tablet box is 'ALMUS' if that means anything?

Yes, been doing some research tonight and seeing that the cost for T3 treatment in the UK seems to be £200-300/month. It looks like people are upset as this has significantly increased in recent years, but still that is not anywhere near £850. I'm going to call my endocrinologists secretary back tomorrow and see if she can confirm with him if there's a particular brand he wants me on, or if not, whether I can get the prescription sent to me directly so I can get it through a different pharmacy at hopefully a more reasonable price. If he's adamant he wants me to go through that pharmacy then I don't think I can afford to go forward with treatment and I'll be back to my NHS GP.

Many thanks, C

SlowDragon profile image
SlowDragonAdministrator

Last week I had another round of bloods, and the endocrinologist confirmed that I am definitely hypothyroid, but not extreme. He has recommended I start treatment with triiodothyrine (T3) to see if that works better for me.

Far too early to consider T3

How much T3 was he prescribing

Thybon Henning 20mcg tablets T3 are 50p each on private prescription

But generally it’s recommended to start on levothyroxine and only add T3 (if necessary) once on full levothyroxine dose

Standard starter dose of levothyroxine is 50mcg, dose is increased slowly upwards in 25mcg steps until on approx 1.6mcg per kilo per day

Approx how much do you weigh in kilo

Standard starter dose of levothyroxine is 50mcg

Many people find different brands are not interchangeable

Which brand of levothyroxine were you taking on 25mcg

Was this same brand on 50mcg

Absolutely essential to regularly retest vitamin D, folate, ferritin and B12

When hypothyroid low vitamin levels are almost inevitable (due to low stomach acid)

Please add most recent vitamin results and ranges

What vitamin supplements are you currently taking

Have you had thyroid antibodies tested yet?

Or coeliac blood test

CJG85 profile image
CJG85 in reply to SlowDragon

So I don't have all my results as the GP only told me information over the phone (no in person visits with covid), and at the start I had no idea what I should have been paying attention to. I've listed out the info I do have as best I can below:

Migraines started once a week in April, and by end of May I was suffering from 3 a week. Had already addressed normal triggers (cut out chocolate and reduced eating cheese, no caffine, staying hydrated) and no improvement.

3rd June... Opticians confirmed migraines were not to do with eyesight

9th June... initial blood tests. Waited 10 days for results. T4 10.5 and TSH 6.56. Don't have my T3 numbers, and they told me my B12 and Folic Acid were low, but I don't know the values.

20th June... started on 25mg daily of levothyroxine, and daily Folic Acid and B12 over the counter supplements.

(issues started and updated GP: feet and hands swelling after exercise. Rash down arms. Fatigue)

29th July... Doctor increased me to 50mg daily of levothyroxine. Took me off all supplements.

(Fatigue got worse)

27th August... 2nd round of blood tests. T3: 13 and TSH:5.07. Vitamin D: 24. Not sure on T4 levels.

Maintained 50mg per day Levothyroxine. Started on weekly Vitamin D boosters (20,000) and restarted B12 and Folic Acid daily supplements.

(above issues continued, fatigue improved but nausea started and got worse, followed by vomiting after meals, dizzy spells when standing up from sitting, brain fog/confusions)

7th October... First consultation with endocrinologist

8th October... Stopped taking levothyroxine

18th October... Full round of blood tests. Results:

Coeliac (IGA slightly elevated but not a concern)

Adrenal: start 125, increased to 575 & 572 (reaction to cortisol injection and results rule out adrenal or Addisons)

Female hormones ok

No pancreatic issurs

HCG no issue

4TH: 12.8

3TH: 4.8

No mention of vitamine levels so not sure if those were tested or if he didn't mention them as they were at OK levels.

Continue to remain off all medication

(vomiting stops after 1 week after stop taking levothyroxine. Nausea reduces over 3 weeks until stops. Dizzy spells stop. Rash stops. Fatigue improves)

9th November... Migraine with another 4 migraines over following 2 weeks.

24th November... Blood tests. Didn't write down numbers but endocrinologist decided to start me on 2 x 10mcgs triiodothyronine (T3) oral preperation daily, but prescription only came through from the pharmacy for payment today.

No migraine in last week, and feeling most energetic in the last few days than I have in the last 6 months. Managed to walk around town and do some exercise this past weekend without my hands and feet swelling up. I'm therefore very wary of what was going on with the levothyroxine. I'm OK to try T3 if thats what the endocrinologist thinks will help, but I now can't understand the bill from the pharmacy for £850 based on what others are saying on the forums here.

In terms of levotyroxine brands I was on, it's whatever is prescribed by the NHS as standard. I don't have the packet for the 25mg tablets, but it was square and white... The 50mg tablets are in a rectangular bronze coloured packet. There isn't a clear brand name I can see on it, just a logo that says 'almus'. I didn't see the prescription as it was sent from the doctor straight to my local pharmacy so I don't know if it would have been listed there

Sorry I have such limited information, but I really didn't know much about my thyroid when I started on treatment, and the last few months I've been such a mess I've not been able to focus on research until now. Really been trusting my GP and now my endocrinologist to advise me properly. But just really concerned over months of generally feeling awful.

😏

Thanks for taking the time to help advise me.

SlowDragon profile image
SlowDragonAdministrator in reply to CJG85

T4 10.5 and TSH 6.56. Don't have my T3 numbers, and they told me my B12 and Folic Acid were low, but I don't know the values.

20th June... started on 25mg daily of levothyroxine, and daily Folic Acid and B12 over the counter supplements.

(issues started and updated GP: feet and hands swelling after exercise. Rash down arms. Fatigue)

29th July... Doctor increased me to 50mg daily of levothyroxine. Took me off all supplements.

(Fatigue got worse)

27th August... 2nd round of blood tests. T3: 13 and TSH:5.07. Vitamin D: 24. Not sure on T4 levels.

Maintained 50mg per day Levothyroxine. Started on weekly Vitamin D boosters (20,000) and restarted B12 and Folic Acid daily supplements.

So

Would be helpful to find brand of 25mcg tablets levothyroxine

Almus is Accord brand - boxed as Almus via Boots or Northstar via Lloyds

Accord don’t make 25mcg tablets so you will have had different brand

Many, many hypothyroid patients find different brands are not interchangeable

Essential to take levothyroxine on empty stomach and then nothing apart from water for at least an hour after

No other medications or supplements within 2 hours of levothyroxine

Vitamin D needs to be four hours away from levothyroxine

Have you had iron and ferritin levels tested

Absolutely essential to have GOOD vitamin levels for levothyroxine or T3 to work well

What vitamin supplements are you currently taking

So you need to retest vitamin D twice year

CJG85 profile image
CJG85 in reply to SlowDragon

Thanks - this is really useful information on the timings. I had been taking the levotyroxine an hour before eating breakfast, but then felt nauseasus for hours after, but now wondering if that could be to do with timings of taking supplements.

The Vitamine D boosters were just once a week with food. So I was taking the levothyroxine tablet on Sunday morning, then an hour later eating breakfast and taking the VIT D tablets. You've now made me think that I should have maybe taken the vitamine D at lunchtime instead to give more time between. Although I was sick and vomiting throughout the week so not sure.

Right now I'm not taking the levothyroxine, just the daily Wellwoman vitamine supplement and cod liver oil capsule (which I've always taken except for the weeks my GP had me off all supplements prior to blood tests), along with the extra B12 and Folic Acid I started after the low level results back in june. My endocrinologist hasn't mentioned anything about my vitamin levels being unusual now, but I'm not sure what he covered in the round of tests he carried out in October as they did a whole spectrum at that time, and he only told me a summary during our meeting after.

I'm going to try and meet back with him before purchasing the T3. From all the comments here it sound alike T4 treatment may have given me adverse effects due to my vitamin levels and which/when supplements were taken daily. I'm a little cross that neither my GP or Endocrinologist mentioned to me about how important the vitamins were, as my GP seemed to be addressing the low/deficient vitamines as a separate issue completely. The timing I took them was purely based on whether the instructions on the box told me to take before or after food, and from what you've outlined I was likely not leaving enough time between taking the levothyroxine and my vitamine supplements.

If he does have more information from my blood tests, and does think T3 really is the best option, then I'll need to ask him about the cost, as I'm now confident that the £850 they are charing me is ridiculous.

Thanks again for the advice - really do appreciate it. Makes me feel happier that I'm not going crazy with all the ups and downs I've been going through with all this treatment.

SlowDragon profile image
SlowDragonAdministrator in reply to CJG85

Many, many people find it best to take levothyroxine at bedtime or in middle of night (if regularly get up for the loo)

Vitamins are low BECAUSE you are hypothyroid

But it’s rare that a GP or even an endocrinologist understand this in connection at all

Being hypothyroid frequently causes LOW stomach acid, this leads to poor nutrient absorption and low vitamin levels as direct result

Getting all four vitamins OPTIMAL essential for levothyroxine or T3 to work well

Trying different brands of levothyroxine or liquid levothyroxine are usually tried before considering T3

Liquid levothyroxine frequently gives much better results

gov.uk/drug-safety-update/l...

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.

CJG85 profile image
CJG85 in reply to SlowDragon

Thanks again. Going to try and find out what my last vitamin levels were from my endocrinologist. I'm hoping they were one of the things he tested for back in October, as the tests I've just done were only for Thyroid, else all I have will be the results from August.

I'm starting to feel less concerned over potentially trying T4 treatment again. It sounds like I could have less of a negative reaction if I take the tablets before bed, and take my vitamin supplements at breakfast.

Just wish I'd reached out to this forum when I was in the middle of the adverse reactions, rather than now I'm feeling OK but have been off the levothyroxine for weeks.

SlowDragon profile image
SlowDragonAdministrator in reply to CJG85

NHS only tests and treats for vitamin deficiency

On Levothyroxine we need optimal vitamin levels

Frequently down to us to self supplement to maintain optimal vitamin levels

SlowDragon profile image
SlowDragonAdministrator

Price of liothyronine (T3)

Prescription should read

20mcg Thybon Henning liothyronine x 100 tablets

This enables access to Thybon Henning 20mcg tablets at 50p per tablet. Boxes of 100 tablets -£50

Roseway Labs or Chemist 4 u or Smartway

thyroiduk.org/if-you-are-hy...

Obviously you will need to cut T3 into half…or into 1/4

But many people need to take T3 as small 5mcg doses spread through day

Starting on T3 ….usual advice is to start SLOWLY

ClareP5 profile image
ClareP5

I reacted badly to thyroid medication until I had sorted my B12 out.

HashiFedUp profile image
HashiFedUp

I get migraines when I’m under medicated or when I’m run down and haven’t had enough sleep. Before I was diagnosed and therefore unmediated, I got them often. But now thankfully they are infrequent. Also check your vitamin D maybe.

CJG85 profile image
CJG85 in reply to HashiFedUp

Thanks. Yes being run down definitely can be a trigger for my migraines, although normally needs to be paired with another trigger (I.e if I'm tired and have been drinking a lot of caffine, then I need to avoid chocolate or cheese else high chance of triggering a migraine). Used to get really awful tummy aches as a child, then when I was 7 the tummy aches stopped and the migraines started. My parents always thought there was a link, but I've never actually looked into it. Just know it took me into my mid-teens to figure out my triggers, and now I subconsciously manage them. Dehydration has always been a big factor, so I tend to avoid holidays in hot countries, as the stress/tiredness from travel and difficultly keeping properly hydrated has always meant I end up being on holiday with migraines which isn't fun. Would be nice to actually enjoy going to a beach which isn't in the UK!!

I only went to my GP once I realised that the migraines were occurring so regularly without my usual triggers being a factor. My D was deficient, so I did do the booster course, so that could have factored into the original cause of the migraines, but doesnt explain why they stopped when I was put on the Thyroxine which was months before the vitamin D issue was addressed.

From all the kind responses so far I'm now thinking that I should have been asking my GP more questions on my vitamin levels, as it seems both the vitamins, thyroid, and migraine issues are properly interlinked.

Lizzo30 profile image
Lizzo30

The late Dr Katherina Dalton used to suffer from migraines around her period but found that they dissapeared when she was pregnant she found out it was due to the hormone progesterone .

Her books are available on ebay she coined the phrase PMS

CJG85 profile image
CJG85 in reply to Lizzo30

Thanks! I'll look her up. Sounds like it would be good reading for me.

Hi - I’ve had migraines since I was a teenager and mine are most often triggered by extreme stress and exhaustion - and often feel like my own biological system is enforcing a rest on me. Also I if don’t eat till late in the afternoon, this can trigger a migraine .

Everyone who has recurring migraines can usually identify their own triggers and they will vary widely from person to person .

I became quite severely hypothyroid in my late 40s (now 67) and I did not experience migraine associated with this, nor treatment - but that is just me ! However, 4 years ago I stopped taking HRT (after being on it for 15 years) while I was treated for breast cancer - and had hellish cluster migraines and eventually, after extensive discussions with my oncologists, went back on HRT. My endocrinologist agreed that I was better off on HRT too . So most definitely a hormone connection there. I still get them but fairly infrequently.

Anything to do with hormone disease and treatment is so very individual .

One thing that is certain is that improvement does not happen quickly and it took 2- 3 years initially for me to feel well after treatment was initiated .

I’m not saying it will be that long for you at all but I agree that it’s too soon to introduce T3.

And your private Endo is a bit off colour wrt the cost of T3.

Whether private or NHS, they are offering an opinion of what could work for you based on NICE Protocols in essence. Only a consultant can prescribe T3 - but your Endo could write to your GP and ask him to prescribe it after a trial period. It doesn’t have to remain on private prescription.

Your GP sounds like a good one in the scheme of things.

When I first tooK Vit D after a blood test identified I was deficient - I came out in a rash all over my torso in a week. So I switched to a mouth spray and that was OK.

I’m saying this just to demonstrate how unpredictably our bodies react to change.

I wish you well going forward and recommend that you make changes slowly . I was well on T4 alone for many years and am now taking T4 and T3 - I’m on about my 5th month of trialling this and can vouch for the good advice on here to optimise your vits and iron levels, giving T4 the best chance to work in the first place before adding T3.

This could take 12 months. I know it’s frustrating - but stopping and starting treatments is likely to extend the period or adjustment you need to recover your health .

Your body would have been going into a hypothyroid state for at least a year before you were diagnosed - it doesn’t happen overnight. Similarly, recovery is not rapid .

And I’d also suggest you go easy on what exercise you do during this period of recovery - your body is going through a big change and needs time to adjust . Take care of it ! Feed it well and give the meds time to work before expecting it to perform how it did before you became hypo .

I know how hard it is - I was a very competitive club runner until I became hypo - but I had to adapt to get well.

Sorry - bit of a ramble !!!!

Really just want to wish you well .

CJG85 profile image
CJG85 in reply to

Thank you. This is really helpful and somewhat a relief to read.

I feel completely the same way about my migraines. And over the last 10-15 years I've managed my triggers subconsciously so very rarely have an attack... And when I do its generally when I've not been looking after myself properly. My dad suffers from migraines and his triggers vary from mine, and from speaking to others over the years who suffer there is always varied triggers that are completely personal. I had a friend who used to drink caffine to help with her migraines, whereas caffine is one of my triggers, so our bodies were having completely different responses.

Reading this forum has helped, although wish I'd researched more earlier. I didn't really realise how big a deal my thyroid function was. I'm a bit frustrated at myself, as I knew 4-5 years ago that I had started feeling off. I've always been incredibly active/driven and worked hard... I've travelled all over the world with work and for pleasure, and was always running around and keeping busy. However I started feeling constantly run down back in 2016/17, but put it down to stress as work and stress in my personal relationships. I was frustrated with myself as I'd gone through stressful times in my 20s and coped with those fine (dad had pancreatic cancer, then a severe motorcycle accident, I moved abroad to work for 2 years etc). At the same time I was struggling with putting on weight, even though my exercise level hadn't changed and my diet has always been good (my mum is a dietician, and with the migraines I don't really eat chocolate or drink sugary drinks). I did start seeing a therapist 2 years ago during the breakup of a bad relationship, but continued seeing her to try and help even out my moods as I found that I was suffering more from periods of depression without knowing why. I'm now wondering if my hormone and vitamin levels were behind some of these changes (I'm not going to attribute it all as I'm sure stresses and exhaustion from over doing it was all having an effect). I just wish I'd asked more questions earlier.

In terms of now. I am a little concerned over the comments on menopause and HRT linkages with migraines and effectiveness of Thyroid medications. I know both my mum and grandmother went through menopause in thier late 30s which is pretty early. I'm not sure how the GP tests for it. Do you know if early menopause would have been picked up with the standard blood tests they run?

I do understand that sorting out hormones can take months, as my GP did warn me of this. And that it will be an ongoing balancing act as my body changes over time. My concern is over my ability to work over this time. When I am suffering a migraine attack I can't work, and generally feel groggy and out of it for 24hours after... So having multiple migraines a week severely impacts my ability to work and quality of life (as I'm sure you have experience of). So I need to get that under control.

With the Thyroid treatment, I'm OK feeling a bit tired and could deal with the rash/feet and hands swelling as although these are not convenient I was still able to get back to work and do some activities. The worry was these things got worse as the treatment progressed. Then once the extreme fatigue and then the nausea and vomiting set in, I wasn't able to do much (I live alone and it was difficult just cooking/cleaning) let alone manage to work. I've had a lot of time off. I'm lucky I have 14 years of dedicated service so my managers have been understanding and helping me work adapted hours, but this really can't continue.

Right now I'm off medication and although I may not be feeling wonderful, and the migraines mean I still have to take some days off, I am able to focus and start getting back to work.

I'm willing to try the T3 to hope it addresses the underlying issues, and potentially will help stop the migraines. However I am concerned over feeling worse again, and I'd definitely be worried about going back on levothyroxine at any point as it means potentially weeks of being very unwell if the reaction remains the same.

With the exercise issue, I really have been taking it easy on myself. But after 6 months of doing very little, I've started to wonder how much of the exhaustion I'm now suffering from is due to the hormone imbalance, and how much is just being being unfit.

From your experience of things taking a few years, is how sick I felt on the levothyroxine normal for so many weeks? I guess I'm just trying to understand if the years it can take to sort out will be this difficult to deal with, or if the changes in how I feel should be more manageable and allow me to continue to work full time while working with my GP to get everything under control?

Sorry for the questions, but it seems like you've had some similar experiences do am valuing all the information I can gather here, as hopefully will help me be more active in discussions with my GP and endocrinologist, rather than just passively going along with recommendations.

Thanks again,

C

Hi - I will be out for some time but will reply later today 🙂

Hi there, sorry its a bit late.I can certainly identify with almost everything you say 😊.

In hindsight I know that I was ‘becoming hypo’ for a long time before I had a diagnosis, and in fact, it took several desperate attempts to get my GP to even do a blood test. He had been my GP since I was a teenager and always hailed me as his ‘perfect patient’! Extremely fit, active, slim - all through my pregnancies he joked about how little weight I put on. We had a friendly, trusting relationship and yet he repeatedly ignored my pleas for help. Said ‘it was about time you put on some weight’ and ‘you do too much - have a holiday’. Like you, I was working extremely long hours, travelling and caring for my elderly mother in between, as well as raising teenagers on my own. In truth, I barely had time to worry about my own health or even get to a Dr.

To say I was suffering is an understatement and I don’t actually know how I didn’t kill myself on the motorways - driving home on a Friday night after working in London all week - always forgetting to pay my congestion charges (!) - unable to hold a conversation at weekends and falling unconscious on other people’s sofas. I once feel asleep in an hotel lobby while booking in; the staff thought I was drunk and fortunately a colleague intervened and told them I was ill, not drunk. Everyone knew I was ill. Except my bloody doctor!

One Monday morning I sat in front of my doctor and told him I wasn’t moving until he did a blood test. I had no idea at all what I was asking him to test for.

Two days later, I had just walked out of Barbican tube station going to an office just off Old Street (I’ll never forget it!) my mobile rang and my Dr said “you’d better come in and see me, my dear. Your thyroid isn’t working.” I had no idea what he was talking about and asked him to explain a bit more. Oh, don’t worry, we can treat it. We measure your Thyroid Stimulating Hormone - we start to monitor it after it goes beyond a range of 0-5. Yours is 27 my dear, come in and see me as soon as you can……….and I just replied “so that’s why I’ve been feeling shit, then?”

So I started the levothyroxine yo-yo. Every time I started to feel better, he reduced the dose. This went on for a miserable two years - my repeated visits to the doctor to tell him I was still very symptomatic. He blamed it on the menopause. It is NOTHING like the menopause! Why doctors ever think hypothyroidism and menopause are interchangeable conditions is utterly beyond me. After many visits - he eventually sent me for a brain scan - quite incredulous in hindsight and laughable. However, it worked out for me because the locum consultant I saw (who had been parachuted in to get through a backlog of work) quizzed me on why my GP had sent me for a brain scan. When I told him the history, he sort of looked directly at me and said quite forcefully - “request an appointment with a private endocrinologist as soon as you possibly can”. And that is exactly what I did the very next day.

Still, I was extremely clueless about thyroid conditions. I saw a private Endo for about the next 14 years and he was great. He gradually increased my levo to 200 mcg and he also oversaw my HRT prescribing, smear tests , ECGs and at one time requested a liver scan. I only paid his consultancy fee of around £100 once a year - every test and prescription was requested by him into the NHS services - and was always provided free of any further charge.

I have to be honest, because he looked after me so well, and I was so glad to feel well - I didn’t look more into my condition. As I have said, I was always working against the clock and had many responsibilities. I just wanted to keep going.

Sadly, he retired and I was back now to a different GP and almost immediately in to the arguments about dosage etc. After a couple of years of this I eventually had an NHS referral in 2018 - a year after I had had breast cancer and I was in turmoil about how unwell the long term treatment offered was making me - and interfering with my thyroid meds. Like you, I was also desperate to get back to work (which didn’t work out in the end after 16 years but that’s a whole other feature film 😂)

The NHS Endo was understanding and backed my decisions and wrote to my GP. But gradually since 2018 I was becoming more symptomatic and although it was yet again a battle to get another referral - I did see him and I am now on T4 and T3. But I was really well on T4 alone for a very long time.

I absolutely understand your pressure to function fully and get back to work. As we know, every one is different so it’s really hard to give advice. But I do think (and I am guilty of this) that we can overthink things sometimes. To give you an example, not long ago I posted on here and asked if anyone had experience elevated blood pressure on T3 as I was experiencing an unpleasant sensation in my chest and higher BP. I got myself in a bit of a tiz about it and blamed my new meds. However, at the same time I was having a particularly difficult time with my daughter, who has a severe and enduring illness. I’ve lived with it for years so it’s ‘normal’ for me. But I recognised that maybe I wasn’t so good as I thought I was at coping with that stress and was all too ready to blame it on my meds. So I put in some coping strategies - took myself out of the situation every single day for a few hours every morning (went horse riding) - busied myself, occupied my mind, forced myself to care for me without thinking I was abandoning my daughter - and lo and behold - my BP came down and I felt so much better.

With regard to your blood tests showing signs of menopause you would have to ask your GP - I think the test would be for FSH - follicle stimulating hormone - which like TSH is produced in the pituitary gland. They are all hormones but with very different functions ! I was on the contraceptive pill for years and virtually went straight into menopause when I stopped taking it. This was a couple of years before I became hypo and I never associated the two conditions.

Honestly, if I were you, I would not stay off your levo. Optimise your vitamin levels - go back on levo and wait 6-8 weeks before increasing it. Try taking it late at night maybe, away from any supplements. Or even every other day to begin with if you think it’s effects are too severe. But only make one change at a time. I do think it is too soon to take T3- it is not a magic bullet and is actually much trickier to take if you have a busy work schedule because it has a short acting time and needs to be taken in at least two doses during the day. (Some people can take one dose a day but it is unlikely that this would be easy to begin with).

Levo is much easier to manage and does actually work very well. The trick is sticking to a regime that you can live with, managing expectation, and taking a long view that you can review along the way. Doctors are only giving you an educated guess of what dose will suit you best. You can take control of that to a large extent by trusting how you feel.

You don’t know for sure that the levo is causing your migraine?

Can you tolerate sumatriptan if you have an attack? I use them - have them by my bed, in my handbag, in my car - as they do help if I take them at onset. Also there are injections available for persistent migraines. Maybe treat the migraine as a separate issue?

Think I’m rambling now! Wishing you the very best

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