I had a GP appointment this morning (double appointment) for a Medication Review. I haven’t had one since pre-Covid when I lived in a different part of the country.
I crept into the surgery with fear in my heart as I prepared to explain the ins and outs of NDT. OH came with me as I was in the middle of a migraine attack and sounded like a drunk.
The doctor was very young, Italian and had a wonderful ‘bedside manner’. When we actually got to the elephant in the room (not on my script of course), he looked at my last blood results which had been done in hospital about three months ago. I opened my mouth to explain and then left it open in astonishment. He explained that my TSH was suppressed and that he would think from my results that I was taking T3. I told him that I took two grains of NDT. Not only had he heard of it but he was able to calculate the T3 and T4 content in 2 grains without any assistance. He told me that my FT4 was low because of the FT3. I pretended I didn’t know that. Didn’t want things to go downhill by being a ‘know all’.
He then asked me if I was taking Vitamin D and I told him I was taking 2000 IU following a blood test which showed my Vitamin D levels to be at 70 nmol/L. He asked if I was taking Vitamin K2 and magnesium as well. I confirmed. We then moved on to why I was taking Omeprazole and I explained that Gabapentin, recently prescribed, was causing gastritis and that I’d only recently recovered from multiple stomach ulcers. He asked why I took Gabapentin and I explained that it was the third drug I’d been given in as many months to treat anxiety and vestibular migraine. He asked if it worked and I told him that it had done nothing for the migraines but had helped anxiety just a little - and that I spent every afternoon in a deep sleep bordering on coma.
I told him that I’d quite like to have my own brain returned as it had been ‘rewired’ by psychotropic drugs several times since my total thyroidectomy for various complaints which, prior to the TT, I’d never had. He said that he would wean me off Gabapentin very slowly and wrote out a schedule. A refreshing change to usual rush job which most GPs seem to think is ok and which ends up in dreadful discontinuation syndrome.
My BP had been done several times by Hospital doctors and recorded by GP. It was done again this morning and was still frighteningly high. It didn’t matter how many times he did it, it remained at 189/100. He suggested that I took Propranolol which would bring down the BP and help with anxiety and migraine p. I told him that I’d had it before for prophylactic treatment of migraine and that it had been a miracle cure. It was then that I had to be ace ‘know all’ and tell him that it interferes with T4 to T3 conversion and could be a problem with thyroid meds. The doctor looked perplexed, checked on BNF /NICE and said that there was no interactions. We agreed that I should have the Propranalol and also monitor my thyroid bloods more regularly, increasing dose if / when necessary. When I got home, I checked all interaction sites including drugs.com. I can find no reference to caution / interactions between Propranalol and Levothyroxine. To be honest, while I’ve read quite a few posts on this subject, opinion has always been diverse among users of Propranalol with thyroid drugs.
The GP also told me to take a good B Complex to keep my B12 high in range. He referred to regular PPI use depleting B12 which I knew. I told him that the hospital had told me to stop B Complex as my B12 was very high at 1800 when top of range was 900. He then said that he didn’t care if the top of range was 4 or 5 times over range. He also expressed the view that B12 should always be at top of range. He has organised a B12 serum test as well as TFTs. As I’ve had no B Complex (Thornes Basic) for 4 months it will be interesting to see the result.
Everywhere 2 look out as we will all be moving to your part of the country! If you could start looking out suitable properties for us all that would be helpful and a field for TiggerMe .
I am so pleased that there were so many positives from the appt. It makes the heart sing x
While it started out very well, I have been distinctly unimpressed by how Drugs.com (for one such site) has failed to enhance its contents as its visibility has increased.
And the BNF does!
The BNF handily lists the issue under Cautions. But (very unhelpfully) uses phrasing that you would only recognise and understand if you already recognise and understand the issue.
Cautions
Cautions For all beta-adrenoceptor blockers (systemic)
Diabetes; first-degree AV block; history of obstructive airways disease (introduce cautiously); myasthenia gravis; portal hypertension (risk of deterioration in liver function); psoriasis; symptoms of hypoglycaemia may be masked; symptoms of thyrotoxicosis may be masked
Those are my thoughts at the moment. It’s probably what I’ll do. As GP said, we’ve run out of options. 😒
I suppose this is an example of what can happen when we self medicate - normally our meds are listed on computer and doctor would get a ‘flag’ if there was an interaction.
It occurs to me that there have been previous occasions where I’ve been prescribed a drug which shows an interaction with something I’m already taking. When I’ve queried it, doctor/pharmacist has said that balance of risk and benefit negates any concern.
During my interaction checks yesterday afternoon, I confused drug.com with drugbank.com. The latter has been my ‘go to’ for years.
I’m not concerned about Propranalol masking thyrotoxicosis as I know that this is not likely to occur if my NDT dose remains the same. I can see that tremor, heart rate etc would be seriously masked.
Drugs that may decrease PTH include cimetidine and propranolol.
Low parathyroid levels affects bone health and density
I was stuck on propranolol for almost 20 years……yes it was highly effective at reducing anxiety …..but it was not treating the cause….just a sticking plaster and resulted in low magnesium and soft bones, which was difficult and painful to resolve
Anxiety is a hypothyroid symptom
My anxiety was BECAUSE I was on totally inadequate replacement thyroid hormones ……More details on my profile
Yes. Indeed it should. When my calcium levels were high I was told to cut out Vitamin D and Calcium. I was a bit perplexed. I thought that my parathyroids should have been controlling levels 🤩
When I joined forum (after 16-17 years on propranolol) I learnt about relevance of vitamin levels (always completely ignored by medics)
Got online access to my old tests from before starting propranolol …..vitamin D was 12nmol (was never told or treated)
2015 Tested everything via Medichecks….vitamin D was by then about 50nmol. Couldn’t tolerate any vitamin D supplements ……read about importance of magnesium when taking vitamin D
So took magnesium supplement for 2-3 weeks first, and then retried adding vitamin D successfully
The Magnesium Miracle by Dr Carolyn Dean explains that propranolol strips out magnesium
Ahhhhh, how wonderful! So they are out there still, those doctors who actually care and know things and listen and don't get offended by knowledgeable patients. I have all fingers, toes and eyes crossed, that this doctor with his wonderful bedside manners, who makes patients feel cared for, will not be shattered into a million pieces by "the system". We need many more and not fewer of them. What a fantastic experience, Everywhere2. I'm so happy, you were allowed to have it.
I hope too that he doesn’t become ‘doctorised’ by the system. I had a very good GP when I lived elsewhere and he has just given up his partnership. My sister, who is still at that practice, tells me that he’s a totally different doctor - looks ‘wiped out’ and disillusioned
Looking at your comments about migraine, our daughter suffered for many years and was taking migraine meds every day just to get through her working day. She had also suffered from’IBS’ for years following ignorance by NHS consultants!Finally, thanks to a neighbour, found out about Dr Sarah Myhill and managed to get an appt for her. Finally, an answer - dairy was mainly responsible for her migraines+gluten for her terrible IBS pain+bloating! Migraines are much reduced with no need for medication and IBS, pain+bloating a rare occurrence, too. So thankful for that appointment as it changed her life. Who’d have thought - dairy was the migraine culprit!
Thank you Lottyplum. Dairy and gluten are often mentioned on here. I don’t dismiss these comments but I do tend to think that I couldn’t develop intolerances at my age. I have IBS as well as migraines but I believe there is a gut/brain link here.
I think I need to grasp the nettle and consider the possibility that I’d feel better without gluten or dairy. I think my body may be trying to tell me something as I’ve “gone off” bread. I do eat lots of yoghurt though and drink milk……..
As I have Hashi+have had a variety of issues as a response (but found D3 wonderful to deal with what was v bad hayfever), at my ripe old age of 74, oral lichen planus kicked off ( tho had no idea what it was at the time) and it's another auto immune condition! I'm gluten free (and love bread) but still need milk in my tea but have oat milk for everything else. I trust you get migraine free as it's awful. When going thru the change I started with migraines with aura but my previous GP (before we moved house) was excellent+helped me greatly. One of those few GPs who listened +took on board what you said. He was also so good re thyroid meds, unlike my new GP practice!!🥴
I have a couple of Italian friends living in UK and they go home for all medical care as they're so shocked at the appalling state of the NHS and how basic it is. One has Rheumatoid Arthritis and was really confused that the consultant in the NHS that he saw didn't even do a physical examination where he gets all sorts of US and other investigations at his GP's surgery in Italy. We're in a terrible state over here tbh
Wow he sounds marvellous, was he nice looking. Do you think the migraines could be because of high blood pressure. Did you try any ways of reducing it like regular walking, I find that if I drink beetroot juice every day that seemed to bring mine down, there is evidence for this . I know I shouldn’t drink coffee but I can’t help it. I’m also worried about my blood pressure and get the white coat syndrome even when I’m measuring it! 🤣😂
It sounds like you have found an excellent doctor who will get on top of your health, let’s hope so. Good luck.
How wonderful to hear there about this wonderful GP. Congratulations and I hope you can see him every time. ! I haven't read all your posts so apologies if this has already been covered, but I wonder if you have considered if low/falling estrogen levels could be contributing to your migraines? Perimenopause begins approx 7 years before full menopause is reached and low estrogen is known to be linked to migraine.
I’m 72 and went through surgical menopause at 47 after a total hysterectomy including removal of ovaries. That said, it’s now acknowledged that even women of my age can suffer from low oestrogen levels which impact upon health.
I had a telephone consultation with a consultant at Menopause Clinic and she arranged for sex hormones to be tested. They were very low and I was prescribed HRT (Oestrogen). I was also (and still am) very symptomatic of low oestrogen. Yet I couldn’t bring myself to take it as I’ve had BC. The consultant said that there was no greater risk of BC in BC survivors than in the non BC cohorts.
I may revisit this one day but at the moment I feel too overwhelmed to even go there.😌
My current dose is 40mg made up of 10mgx4. I have prescription for between 30 - 60mg per day (as required).
I got right down to 2 x 10mg for quite a while, but recently had an increase in migraines & I also noticed in my case it occurred “mid cycle”, I could possibly be perimenopause.
I definitely have higher frequency / worse migraines when thyroid levels are higher, Including vomiting & ear ringing for hours / up to a day/ afterwards.
I’ve read - Propranolol is re-prioritising the conversion of T4 to RT3 over T3, so helpful for me as I have hyper (controlled by carbimazole) but not ideal f͏o͏r anyone with hypothyroidism who may be struggling to raise FT3.
My thyroid levels had increased right to top of range but, as within range the GP ignored it. I was arguing for increase & he only agreed to 5mg for week. This is usually the opposite, most doctors increase by too much but the GP sees the specialist letter saying my TSH will be 0.01 and ignores the rest.
I never been diagnosed with a specific form of migraine & never offered help / treatment (just take paracetamol) 6 a year is insignificant. Dr scoffs at suggestion it’s affected by thyroid levels, especially as I mentioned migraines years before being diagnosed hyper. I pointed out I was also hyper years before being diagnosed with it.
When migraines get worse dr suggests propranolol increase rather than looking for cause or factors affecting them.
Thanks PN for all that very useful information. It’s much appreciated
I take NDT (2 grains) and my FT3 is always near top of range. I understand that the conversion rate is only minimally affected so I’m going to take a chance and keep an eye of my FT3.
I’m a little confused about whether this issue relates to people who are euthyroid or just those who take exogenous hormones. I can’t really understand the science of it just being the latter - but then I can’t understand much about science anyway 🙄
I’m another person who definitely gets migraines when thyroid levels are wrong. Of course they don’t believe us. But I have proved that a low level makes my migraines more severe and more frequent. My usual meds don’t help. I have to put up with the 2-3 days of pain and fatigue (luckily, usually only 1 day of vomiting) and then carry on. I managed to prove my point a couple of years ago to my now GP. My FT4 was bottom of range. An on duty, on phone GP said take propranolol but I did a home blood test and proved otherwise. Thank goodness my GP was available after that.
I can’t ever take paracetamol for a bad head of any sort. Turns it into a bad migraine very quickly. Too many of us left to suffer with these debilitating issues for too long. I wonder what happened to “a stitch in time saves 9” theory?
GP face to face appointments are hard to come by. I had to fight tooth and nail for this one and it was just sheer good luck that I saw this GP and not Dr Grump. 😉
We can get face to face appointments here and have done throughout the pandemic, but I have never been given a face to face review appointment. I see the dates for them on my prescription, but our doctors just seem to review us on paper without seeing us. Not good all this inconsistency everywhere.
No it isn’t. I was vociferous in my insistence that I should have a review as a new patient to the practice. The practice are aware that this is an entitlement
This was my first GP appt in 13 months
I didn’t expect it to be with a doctor and I didn’t expect it to be a double appointment.
Unless you move to a new practice, reviews are usually done ‘on paper’
Sometimes you just have to keep fighting your corner
I think I need to be more assertive! I mean without talking to you, how can they judge your health and wellbeing just looking at paper results? I lost 3 stones in weight and had strange growth with 2 toenails, was referred to a nurse and I tested negative for fungal infection and that was all that was done. I even had to phone them for the result. It was only because I noticed they had started to grow more normally again that it clicked with me that my last thyroid test had reduced my medication, probably due to my weight loss, and that being lower in weight meant I needed less thyroxine! I got so little information when I was first diagnosed in 1994, just that I needed to take a daily tablet for the rest of my life! I have started asking for prints of my results at the surgery, but all they show is the TSH result and range. The National Thyroid Register (UK) do my annual tests and all they say in my test result letter is to continue on the same dose, or whether I need to increase or lower it and by how much.
The issues you mention are health issues which should be seen by a GP irrespective of a review. A review is really a Medication Review.
You must ring the surgery and make an appt for a consultation about these troubling issues.
I’m really sorry to hear about your poor care. This forum will give you every support but you must request an appt with a GP when it’s necessary
Best wishes 😉
helvella
This is the PIL. There is no mention of interaction per se, nor of issues with conversion. The emphasis seems to be on risk of Propranalol masking symptoms of hyperthyroidism
I’m hoping that the fact that I’ve asked for the SR version may mitigate any adverse affect on thyroid meds.
When I was ‘normal’ and younger I took this for 20 years for migraine prophylaxis and had a consistently low BP and a heart rate of 40 bpm and felt wonderful.
It is extremely poor at communicating to you, the patient, what it is saying. And a doctor who didn't already know would not understand the meaning, the mechanism, the why, of the two provisions within Warnings and precautions.
My brain is now mush but even in Warnings and Precautions I can only see a reference to Hyperthyroidism.
I understand completely what you mean by the ‘Whys’. I’ve so often asked why certain side effects are included on PILs and why they’re there and been met by blank looks - only to realise later that ‘hair loss’ or ‘fatigue’ are listed because thyroid has been affected by the drugs.
I suppose we have to remember that the side effects listed on PILs are largely the result of Yellow Card reports. People report side effects to the drugs, not conditions they have which they believe have been affected by the drug.
have a condition caused by an overactive thyroid gland (thyrotoxicosis). Your medicine may hide the symptoms of thyrotoxicosis.
But you have to mentally work your way back and say that if it hides symptoms of thyrotoxicosis, how does that happen? Ah! Reduces conversion so high levels of T4 don't become high levels of T3. Which is pretty much the entirely 'other way' version of the meaning of the words they have chosen.
Although, could it be argued that the reduction of palpitations is what that refers too? I was twice prescribed beta blockers for palpitations. Which, I eventually realised was not a problem with my heart as such, but a symptom of thyroid issues. But I was prescribed it for so called 'heart issues'.
My sister was an Advanced Nurse Practitioner before her retirement. She had to do a Prescribing Course and roped me in to help with some of the assignments.
It was so difficult. I was totally at sea. It was a black art.
She had to have a GP supervisor for this and he said he hadn’t got a clue what much of it was about. He said that the detail of pharmacology and pharmaceuticals within the context of prescribing didn’t have much time on the syllabus at med school.
Good Lord. They didn’t spend much more than a day on the thyroid either!
I was surprised to learn when I went to surgery for my appt that all prescriptions issued by all GPs have to be ‘signed off’ by the clinical pharmacist before being sent for dispensing.
The role of the CP is huge now. The one at our surgery has a depth of knowledge which is quite amazing. He has a further qualification in pain relief.
Whether he ‘signs off’ GP scripts just to keep an eye on the drug budget I don’t know. He could also be checking for prescribing errors.
My previous practice never used the CP in this way. It could be a real step forward in general practice
Their role in managing the drug budget is a real ‘balancing act’.
I asked GP, as a matter of interest, if they always prescribed the cheapest drug as first line. His response was surprisingly unequivocal. Only Simvastatin. OH was with me and he’d had serious side effects from Simvastatin which disappeared when he was changed to Pravastatin. It seems though that only a small minority are intolerant of Simvastatin (or report such intolerance! )and there is a significant price difference between the two.
The difference also depends on dose. Pretty insignificant at 80mg. And the cost of just one GP appointment to say you are having side effects from Simvastin will cover quite a few months of additional cost!
Good heavens. And those are only reported incidents /events. It doesn’t bear thinking about. I don’t want OH to take statins - and he has even less inclination - but he has familial hypercholesterolaemia (genetic) and a family history of coronary thrombosis so there is little option.
Additionally his two brothers had Alzheimer’s Disease and died in their sixties. Not many are aware of emerging research which links Alzheimer’s with high cholesterol
I had a two year flirtation with Duloxetine (Cymbalta) for neuropathic pain. PIL stated in Warning and Precautions section that patients taking Thyroid Medication should be aware of potential adverse effects. I asked the pharmacist Why/How? She was friendly and helpful but could only reply that it could affect thyroid levels. I did the Why/How? routine again but could get no further.
It was only after spending a few weeks of lockdown playing Medical Detectives that I learned that this drug, an SNRI, raises cortisol. We all know what high cortisol does to thyroid levels. It also causes weight gain without changing eating/dietary habits and high BP. Increase in cortisol, weight gain and increase in BP are all listed as side effects.
Someone, somewhere needs. to link the Whats / Whys /How’s together if PILs are to have any meaning at all.
Is decreased conversion so much a problem when on NDT? I´d think it would be more of a problem for those on levo only.
• in reply to
I’ve considered this. It’s less of a problem certainly than when on Levo alone. The ideal scenario is to be taking T3 only.
Blimey, I'm absolutely gobsmacked and delighted for you. What an amazing helpful GP you have encountered. Yes, all round to your neck of the woods or maybe we should get your GP to go round all the surgeries in the country and give them a talk of how to treat patients with thyroid problems.
Totally agree with you. We,seem to have gone from the Dr telling us not to Google our illnesses to them actually googling it themselves !!. Doesn't fill me with confidence in them at all.
Same. Younger, usually male, and from another culture out with mainstream UK nearly always has the same outcome for me throughout the years for almost all ailments. The older, shall I say British are much more entrenched in their unwavering beliefs. And, generally the same in major research cities like London etc.
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