AIBU to think my under active thyroid has now gone overactive?

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Ive had years and years and years (probably at least 10 since my last child was born) of feeling like utter shite. Been diagnosed with arthritis, had fibromyalgia suggested, referral to sleep clinic because I snore so loudly and wake myself up. Finally in September I had some blood tests and the GP said I had an underactive thyroid. Started taking 50mg of thyroxine then.

But since then I have felt even worse! Had a phone appointment with an endocrinology consultant at the beginning of November and supposed to have had a scan because my neck is huge. Like people I havent seen in a while are like erm wtf is with your neck. Obviously COVID means this isn't happening. Since then I've had racey heart all day long and my hair is falling out loads.

Can it swing between high and low? I would say I have more classic low symptoms - I am the fattest I have ever been, I am so exhausted its like that first trimester tiredness, my bones hurt, my periods are all over the place. But then the racey heart also.

Should I push for the scan? My ginormo neck is bothering me a bit....

You can't really swing between the two. If you have been taking to high a dose of thyroxine for a prolonged period, I believe that can send you over, but 50mcg, is quite a low dosage.

I think that you do need the scan, so push for it. You need a diagnosis.

I have Graves Disease, which causes an overactive thyroid. During my treatment for it I did swing between overactive and underactive, but that was caused by the treatment itself (radioactive iodine) and until the blood tests began to show the my daily dose of replacement thyroxin was correct

If your thyroid is underactive but your replacement thyroxin dose is too high for you then it will begin to register as overactive, or that is how I understand it.

I think a swelling in your neck around the area of the thyroid gland is called a goitre. That must surely mean that you actually need to be seen by the GP, with a view to referral to an endocrinologist.

My Mam has an under active thyroid and she swings between under and overactive and it’s been like this with years, her specialist says it’s not common but can happen. Push for further testing

I swing between the two so I think it is possible.

Hi OP, short answer is YES you need to push for that scan. Huge neck sounds like the start of a swollen thyroid (goitre) and those can need surgery. In the first instance starting with your GP isn't a bad idea, you could send a photo on email if they don't want to do an in-person appointment?

My thyroid levels have swung between over and under-active - my healthy TSH levels are 0.5-2.5 but in the past 18 months they've gone as high as 40 and as low as 0.003. The explanation I've been given is that my thyroid is damaged and so more vulnerable to infection than normal, and on getting these infections it basically goes haywire.

If you have weight gain and hair loss then those are classic under-active symptoms, but of course the racing heart is an over-active symptom. I suspect (I'm no medic but just from my experience) that you are having a thyroid infection and may need some specialist monitoring and help.

I don't have experience of goitre but it's a significant thing and if I were you I'd be pushing hard for prompt treatment - even a video appointment with a consultant might help? Could you pay to go privately for speed?

The British Thyroid Foundation website has lots of good info and is a great starting point - I've always made a point of asking exactly what they tested for, exactly what my results were and how far outside the normal range - I feel like the more you understand your test results and your diagnosis, the better. Wish you all the best

Oh thank you everyone and @WoolyMammoth55 that is really useful thanks so much.

I forgot to add (isnt the brain fog another delightful symptom!) that I did see a GP who gave me an urgent referral for endocrinology. The endocrinology consultant then referred me for a scan but no appointment yet and no in person appointment either.

I do quite a lot of Zooms with work and its like my swollen neck is staring back at me! Stupid thing. And I can feel my (racing) heartbeat in it.

I will leave another message for the consultant and see where that gets me!

How old are you ?
Some of your symptoms could be peri-menopause.
Have you had your iron levels checked as palpitations and hair loss can be iron deficiency.

40 but had millions of blood tests recently and iron deficiency not been picked up by that. I've been anaemic before though and this doesn't feel like that.

My cousin had had a goitre removed many years ago (which is probably what you have in your neck). She also had Firoimyalgia. Since then she has had an unstable thyroid and she would swing from having an under-active to an over-active thyroid but not in a matter of days. It took several weeks. Her GP wasn't great but the hospital told to to adjust her own medication as she could judge it better than her GP.

I would at least get your heart checked just in case you coincidentally have Atrial Fibrillation.

I have had an under active thyroid since giving birth to my second child. 50mg a day was enough to push me right into being overactive. My gp thought it was very unlikely but ordered bloods, and my numbers were crazy. It took me years to find the correct balance of meds. I now take 25mg each day, and 50mg on Sundays. Once or twice a month I take an extra 25mg tablet if I feel a bit under. I feel fantastic now, most of the time.

I swing between the two so yes it very much is possible

I also have Graves and had to have my thyroid removed. That was 20 years ago and for a long time, I just took my medication and thought no more about it. But as I've gotten older, I definitely swing between high and low. I think the hormonal changes that are happening elsewhere in my body as I age are a contributing factor. I would definitely push for a scan if your neck is swelling x

I have been on levothyroxine for just over a year now, post partum like yourself, I find when hair drops out I need an increase so now on 125mg. Have you had a blood test recently to check your levels? You should have them every 6 weeks, until the correct tsh is found. X

Can you only swing between the two if you over do it with the thyroxine? Your TSH should be close to zero for the optimum dosage.

I had a blood test at beginning of November but it got lost! They found it 4 weeks later at a different hospital but the consultant still hasn't told me the results and my GP said they can't access them because endocrinology requested them.

What a palaver!

Assuming you are in UK, an urgent referral from a GP should mean that you have to be seen by the consultant within 2 weeks (it does in my area and I have had two different specialty appointments that way this year). I assume your telephone consultation fulfilled that criterion. However, as you have still not even received a date for an ultrasound appointment, it implies the consultant's request to ultrasound dept has gone astray - you need to chase this up with the ultrasound dept and/or the consultant's secretary.

To clarify - phone ultrasound dept and consultant's secretary. ask switchboard for a number for endocrinology dept if you can't get through to sec - then ask them for sec's email address. If all else fails, contact PALS at the hospital - they advocate for patients when there are these sorts of problems and will chase it up and find out what is going on for you. Being a hospital patient sometimes means you have to keep an eye on things as you often get "lost" in the system.

Oh right, tell your gp your symptoms and request he does one to see if you need an increase with the symptoms you are describing I can't see why he couldn't, especially if endocrinologist is taking so long to get back to you.

Hope you get somewhere soon as symptoms aren't nice to live with on a daily basis!

why can you not have a scan? They are still going ahead despite covid. I have thyroid issues and had 2 scans recently. diagnostic scans are taking place.

Speak to GP or consultant to get a referral for a scan in place. If your neck had become huge lately, this should be done on an urgent referral pathway.

And get up to date thyroid blood work done. A scan can look at modules and enlargement but won't tell you what your thyroid hormones are doing.

I called the scan department and they said they have my name but can't say how long it will take due to COVID and staff illnesses.

Thanks for your help everyone i really do feel like shit and will be working 2 jobs from January so could do without it!

You can most definitely swing between the two.

Hashimoto's?

I have Hashimoto’s and absolutely swing between hyper and hypo states. The sun makes your thyroid work more efficiently, so I tend to follow a pattern of being hyper in summer and hypo in winter. Now that I know it’s coming, I adjust my medication accordingly.

I was diagnosed a decade ago and still have ups and downs, but for the most part live a normal life and have good energy, work out etc. It never affects my weight. I also have PCOS, but am still a size 8. What it does affect is my moods, my sleep, my digestion etc. Certain foods—particularly sugar—cause an inflammatory response and I have more symptoms. Sleeping well is crucial. If this is part of your thyroid health journey, in the words of my doctor, “sleep by whatever means necessary is crucial”, so I do rotate between valerian, melatonin, hops and prescription sleep aids.

If your neck is that swollen, you could have a goiter. Have you ever seen an endocrinologist?

If you have Instagram at all, I highly recommend you follow Isabella Wentz, Chris Kresser and Amy Myers. They are pharmacists/integrative health doctors who look at Hashimoto’s from a full body perspective. Their advice is a game changer.

It’s a lot of hard work—a bit like having another child. For starters, to feel well, I supplement with magnesium, selenium, inositol, vitamin D, vitamin C and some supplements to support my adrenals. Conventional medicine doesn’t necessarily acknowledge the existence of adrenal fatigue, but the thyroid does not exist in isolation. I have worked hard to balance my insulin and adrenal levels, not just my thyroid, in order to achieve a state of relative wellness. It takes time, it’s exhausting, but despite what doctors often say, popping a levo pill daily is only a fraction of the battle when it comes to dealing with Hashimoto’s or Graves.

Good luck with everything and please keep us updated.

You can swing between the two. I do. It's rare but possible. Mine is caused by Graves' disease which usually just causes an overactive thyroid but in my case the antibodies block and stimulate.

If you have hashimoto's (the autoimmune disease that causes an underactive thyroid) in the earlier stages of this attacks on the thyroid can cause a dump of thyroid hormones in the blood causing you to become overactive for periods of time. This is called hashitoxicosis.

If you were put on 50mcg in September you should have had 4-6 weekly blood tests to check your levels and increase your levo. 50mcg is a very low dose. Most people when optimally medicated are on 100-150mcg.

I would be calling PALS by now re the lost blood test. That's really unacceptable to leave you feeling this unwell and not be monitoring you. That blood test is out of date now so likely needs to be repeated and meds adjusted accordingly.

Your hair falling out could be hypo or hyper. It could be low iron/ferritin or zinc. Vitamin deficiencies are common with hypothyroidism. You really need some blood tests to establish what is going on. I'd recommend you post the results with ranges in the Thyroid UK forum on Health Unlocked when you have them.

Palpitations can also be a symptom of both hypo and hyper. Low iron/ferritin can also cause palpitations.

You really need a new blood test to see what is going on. Ideally this would include TSH, FT3, FT4, TPO, TG abs, b12, ferritin, folate, d.