I’m losing my mind :(

[Lipbalmaddict01]

Hi, it’s been a really long time since I posted because for once I was feeling really well with all my various conditions, so much so that I started my own little business walking dogs. About 6 months ago I started to really struggle with my energy levels, breathlessness (as if I was getting less fit) and then I began having falls. Bad, out of nowhere face plants, and feeling generally unsteady on my feet and very dizzy.

Fast forward 5 months and I’d been seen by a neurologist for a brain and inner ear scan, a vestibular physio who said it wasn’t a vestibular issue, and then to a cardiologist as my GP suspected I may have Postural orthostatic tachycardia syndrome, with my blood pressure hovering at 90/50. He’s done an echocardiogram, 7 day heart monitor and is talking about a steroid to raise my blood pressure, but saw no spikes in heart rate to support POTS. Both neurologist and cardiologist said I need a walking aid as my lack of balance so pronounced, and I have lost business because who wants their dog walking by someone who could fall and drop the lead and injure their dog. It’s been gutting. It’s also really hard to walk more than one dog when carrying a walking stick.

3 weeks ago I developed alopecia, I’ve had it once before but at a time when by brother was fighting for his life, and this time there is no traumatic cause. The locum GP decided to run thyroid function tests just to check my levels. I should point out that since I was diagnosed with under active thyroid my levels were being checked every 3 months along with a lithium test (bipolar) and my GP was fantastic. He’s been on long term sick for 12 months but I was still getting the letter every three months for a blood test perhaps stupidly assuming this routine was being continue

Last week I got the royal treatment when the surgery rang and said I needed to be seen that day, and I even got to pick which GP I saw. At this point I thought it was terrible news.

It turns out it was pretty shocking, as my TSH which should be suppressed was actually 11. FT4 was around 1 but for some reason FT3 hadn’t been tested. Turns out I hadn’t been tested in 12 months!! Worse still, my endo had written to my doctor when the list of meds including liothyronine was published to be axed by the NHS. She suggested trying 150mg thyroxine but if I became symptomatic should probably get T3 on a private prescription because of conversion issues.

For some reason that dose was input into the GP system as 50mg thyroxine, so that what i’ve been unwittingly taking for 18 months. You’re right to wonder why I didn’t notice the dose on the box, but because of severe memory issues and the sheer amount of medication prescribed, (some very dangerous), my GP and pharmacy decided to prepare weekly dosette trays for me to save confusion or missing important meds. So each day I look at the blister pack and check the shape, colour and number of the pills in each window and take at the 4 intervals as prescribed.

I’m so sorry for the essay, I hope at least someone has stuck it out! My question is by just adding the extra 50 that I should have been taking, will this be enough to have an impact fairly swiftly, or should I see my endo (at the cost of £250) and see if she would do anything different? My fear is that having taken 18 months to get to rock bottom, will it take as long to get back to where I was? My biggest fear is falling and hurting a dog in my care, or falling and breaking my leg so I can’t work and my business folds. This is literally by dream job and I can see it slipping away 😢

Thanks for listening

Xxx

[waveylines]

Am so so so sorry to hear what has happened to you. Terrible!

So you have been taking a third of what you should have been taking for eighteen months? No wonder you feel so awful! 50mcg is a starter dose. Hypothyroidism is called the great mimicker because it can present in a very diverse way. Fingers crossed that as your hypothyroididm becomes optimally treated once again many of your symptoms will disappear.

Am afraid you will need to raise it in increments of25mcg with a gap of several weeks imbetween each dose increase. This is to give your body a chance to adjust to each oncrease. Whether you need to leave the full period in between each dose increase is debatable and you may wish to shorten it until you get closer to your advised dose of 150mcg.

I would also ask your GP to check your b12, vit D, folate and iron. These need to be optimal (not just in range!) for your body to make best use of your thyroid meds.

Rather than going back to your endocrinologist can you not just ring to inform them what has happened? He/she may well advise on a faster protocol to reintroduce back without having to see you. Its so shocking this has happened to you. Am afraid such errors are increasing I fear this is due to the ridiculous expectation on GPs to manage their patients with so little time. Ive noticed my scripts (I have several meds) are rarely correct these days and am constantly having to chase them up for corrections even those on repeat for many months......am in the midst of doing this again........lol.

Hope this helps and you start to feel better soon.

[Wetsuiter]

you may find that even tough it'll take a while to get back to full speed, you may START to feel a little better within a short amount of time.

i understand admin errors can happen, but what.on earth were they doing with all the bloods?!!

[SlowDragon Administrator]

As you have been so poorly treated and extremely under medicated it's highly likely you have low B12, folate, ferritin and vitamin D

See GP and get these tested ASAP

Low B12 can cause falls and dizziness

[shaws Administrator]

Isn't it a disgrace that, when we have problems/symptoms which could well be due to the inefficiency of the medical profession to really know all of the clinical symptoms, especially when we're not on an adequate dose of thyroid hormone replacements but because they are within the 'normal range' that doctors take no heed of the fact that TSH should be around 1 or lower when we've been diagnosed. They should also test Free T4 and Free T3 both of which should be in the upper part of the ranges - not middle or lower. The latter two are rarely tested.

thyroiduk.org.uk/tuk/testin...

thyroiduk.org.uk/tuk/about_...

If you've not had thyroid antibodies tested, ask for these as it would mean you have the commonest form of hypothyroidism, called Hashimoto's, and antibodies are present in your blood.

This is the method to get the best results from the blood test.

Appointments should be at the earliest possible: fasting (you can drink water and allow a 24 hour gap between your dose of levo and the test and take afterwards. This method allows your TSH to be at its highest and it varies throughout the day and it could mean the difference between getting an increase in levo or not.

GP should also test B12, Vit D, iron, ferritin and folate. Everything has to be optimal.

[Lipbalmaddict01 in reply to shaws]

Thanks Shaws, I’ll take this info into the meeting, when I finally get one! X

[BadHare]

Have you tried NDT to see if you feel better?

I swapped to Metavive earlier this year & have found it as good as the type I bought from the US, though around the same price. I take T3 also, but find I don't need lipbalm every day when I take NDT after needing to apply it at least hourly. I can also tolerate more sunshine & several other almost lifelong skin issues aside from cracked lips & heels are no longer an issue,

[Lipbalmaddict01]

Thanks so much for all your kind and thoughtful comments. I feel totally broken and utterly miserable. I’ve lost around 60% of my hair now in a mass shedding of telegenic effluvium caused by my terrible TFTs and have had my first depressive episode in 2 years with no other stressor than my current situation. I have lodged a complaint at my surgery and was due to see the managing partner today, but found out quite by chance that he’d taken annual leave and that the appointment was cancelled weeks ago but they didn’t bother to notify me. I know the NHS is under strain but you’d think having caused this mess they’d be a little more careful in messing me around. Apparently not! I think they work on the basis that the vast majority of people would be extremely reluctant to sue the NHS, so as long as they don’t kill anyone, it will likely go unreported and nothing will change. I’ve had a letter asking me to make an appointment for TFTs now I’ve been on the correct dose for some weeks, but they don’t have any appointments until after New year.

Does anyone have any tips on how to get them to sit up and take this seriously?

Thanks x