Hyper to hypo panicking a little

[Shellsbells22]

Hi hope I can get some advice as this seems so helpful to others I was told I had an overactive thyroid left weeks to hear from endoc but because I was so anxious, angry in a mess I had to ring doctors to aks for help so a different doctor started me on carbimazole I've been plodding along with this not feeling that much better had a blood test I'm not underactive and my orig doctor who left me to get on with it has now told me yesterday to just stop taking it and tht worse that can happen is I'll be over active again and I'm scared my mental health isn't the best and this thyriod issue has taken me so so low I also have other conditions fibromialgia psoriatic arthritis anxiety depression ptsd I just need any advice please I know it's the weekend I'm happy to go without for the weekend and speak with docs on Monday but I really don't know what to do how quickly could I go back to being over its all a new and an absolute nightmare for me please help if you can I would really appreciate it thank yiu x

[PurpleNails Administrator]

Hello shellsbells22, welcome to the forum

How long were you taking carbimazole? What dose?

With autoimmune thyroiditis known as Hashimoto you can have a period of transient hyperthyroid before becoming hypothyroid.

Carbimazole will hasten the drop in levels so not the right treatment with this condition.

The other cause of hyper is Graves which causes continuous hyper.

Carbimazole lowers production of new hormone not existing levels, which is why a specialist must carefully monitor your thyroid levels and adjust accordingly to keep you in range.

Yo yo ing levels caused by inappropriate carbimazole dose will make you very symptomatic.

Has the cause of your hyper been determined?

Can you view to blood test eg by online access? Set up access if offered by practice as it’s extremely useful to track progress.

In the meantime obtain printouts of your results via practice reception (don’t ask doctor, they don’t like it). & do not accept verbal or hand scribbled notes you need a printed copy, with a sample date & ranges (ranges vary between labs so essential).

For full thyroid function you need

TSH, a pituitary hormone which lowers with hyperthyroidism. This isn’t reliable and takes time to recover especially after a period of hyperthyroidism.

FT4 which is thyroxine and becomes too high. needs to be in range.

FT3 which is the active thyroid hormone, converted from T4 which rises. Also needs to be in range.

Antibody testing will help confirm the cause of your hyper.

Thyroid Peroxidase (TPO) and Thyroglobulin (Tg) associated with hashis

TSI or TRAB must be tested if Graves suspected.

Being hyperthyroid (or hypothyroid) can cause some low nutrients, which need to be optimal.

Folate

Ferritin

B12

Vitamin D

See if GP will test for these, if not there are private testing options.

[Shellsbells22 in reply to PurpleNails]

Hi purple nails thank yiu for getting back to me if I'm honest its all so new to me I've been on carbimazole for about 6 weeks had bloods done last week I will have to speak with docs to get my results it's taken doc a week to ring and say OK you have gone the other way now your underactive and advised me yesterday to stop taking 20mg carbimazole I said I was frightened it would take me over again as my mental health hit the deck I was so angry and just couldn't cope their response was we will ring you next Friday to see how you are I'm in the middle of changing anti depressants to I was taking 5htp not sure if you have heard of it it's herbal they want me to taper of that and start proxatine I have one doc trying to help witg my mental health and other who's dealing with the thyriod side just not really thinking about the impact all this will have on me I have never had a problem with my thyroid up until now they seem to think issues I'm having with the mental health was due to a trauma I had bout 3 years ago it's emotionally catching up with me so not sure if that could affect thyriod function I really don't know it just came out of nowhere as yiu can tell I'm waffling lol so not sure what I'm doing or what to do. Thinking about what you have said when I looked at the symptoms trying to figure out what was going on I actually had more symptoms of underactive then I did over yet the doctor was telling me I was very over active at the time. Should I not take the carbimazole till Monday and speak with the doc

[PurpleNails Administrator in reply to Shellsbells22]

You have a lot going on which can’t be easy you.

Stress & trauma can be a huge trigger for thyroid issues & it is said Graves especially can be brought on by a specific event.

Symptoms of high & low thyroid can be similar. Both are very varied & diverse. A mixture of symptoms typically associated with either hypo or hyper is often reported at the same time.

I was moderately overactive from a nodule. My FT3 was nearly double by the time it was detected and it had been building for nearly 5 years. Graves patients often have levels 3 or 4 times the norm which suddenly appear.

20mg is a fairly low starting dose (up to 60mg is required for some). I also started on 20mg dose. In 2 months my levels were nearly under range. My. TSH hasn’t never recovered nearly 3 year later now.

So I think it important for you to see what your original levels were and where you are now. Doctors often go by TSH alone, whereas when on carbimazole your FT4 & FT3 should take priority. It is possible you were not a severely hyper as the doctors view it but are now severely hypo.

So, if it were me, as your last results show your thyroid levels low, I would stop the carbimazole and arrange another test soon to recheck levels (eg 2 weeks). This will show if you need to resume medication.

Focus good nutrition at this time and only gentle / relaxing activity. Avoid over exertion as this will apply unnecessary strain to your body.

Reading and research can be rather overwhelming at first but it you do a little at a time, and take notes to re read your understanding will gradually develop.

You might find it helpful to start keeping a diary of any new or changing symptoms. Note medication doses and any supplements you take. This will help when you interpret your test results. Make notes of things you plan to discuss with your doctor.

Members of this forum will help guide you and offer advice.

[Buddy195 Administrator]

Hi Shellsbells22,

Do you have any thyroid blood tests to share. If so, do post (with ranges in brackets). If not, do ask your GP for a copy.

Have you had your antibodies tested at all?

I’m very grateful to advice received on this forum, highlighting the importance of antibody testing, as I was diagnosed as having Graves on thyroid blood tests & symptoms, yet antibodies showed I have Hashimotos. Treatment for the two conditions is very different, so it’s important to get the correct diagnosis.

I remember the shock of being newly diagnosed & the stress around this. Please believe that you will feel tons better when your thyroid medication and your key vitamins are optimal. This is a very friendly forum and members are here to help and support you!

[Shellsbells22 in reply to Buddy195]

Thank you I appreciate the help xx

[NIKEGIRL in reply to Buddy195]

Love u Buddy 195 🥰

[NIKEGIRL]

Hi. I have Graves. I had the antibody testing done. U need the antibody testing done that way u will know what you have. Either Graves for hyper or Hashimoto for lower. Each treatment is different. What I wanted to say was I take 5HTP. I tablet a day. I never found it helped with my mental health. I got suicidal maybe 2 months ago. Psychologically either disease puts u through a wringer and comes with mental health issues. There are people on the forum who do not believe anti depressants are problem solvers and I would agree with that BUT when u r at an all time low then using anti depressants becomes a tool on a short term basis of 3-6 months that will allow breathing space for u to cope and to work on core vitamins ie. vitamin d, selenium, iron and B12. I am not saying take antidepressants either but I am saying they are an option. Secondly, if u r dealing with trauma then no drugs will help with this long term. A psychologist who specialises in trauma will be your best ally here. Using cognitive behavioural therapy. I have trauma so I know from my own experience what I am talking about. The psychologist will be able to help u cope through this thyroid diagnosis and your trauma. There is hope. U need some help and u know that. Antibody testing, vitamin testing and thyroid testing along with a referral to a psychologist are all good starting points. I hope one of the administrators will come along to give u more advice. U r not alone. 🥰PS I was prescribed antidepressants but I never took them. I promised myself if I had one last breakdown emotionally I would take them but I kept seeing the psychologist and taking my medication and came through it albeit I was a total train wreck I really was. U can do this. We r here to support u.

[Shellsbells22 in reply to NIKEGIRL]

Thank you I appreciate it. I will get on to my doctors about the antibody test I am waiting on cbt think I'm going to have to make some noise to be heard at the doctors and ask only one doctor deals with me at a time as some seem more helpful then others would taking a multivitamin help which do u recommend in was taking b12 but didn't feel a difference at all maybe I wasn't on enough just sick of taking tablets and feeling no better for it. X

[NIKEGIRL in reply to Shellsbells22]

Hi. I live in New Zealand. I am paying for my own psychologist. The only way I would have got one funded through the health system was if I attempted suicide. Absolutely disgusting. Push, push, push for a psychologist. A good psychologist with specialises is trauma and chronic illnesses is worth his or her weight in gold. My psychologist said we had to address the Graves’ disease first and trauma second. It’s only by having the psychologist support that I have stuck my drug regime and come out the other side in 8 weeks and when I saw I was a train wreck I whole heartedly mean it. A total wreck. There is hope out there. Dealing with the thyroid issues will go a long way to help u then being able to deal with the trauma. I am only just starting the trauma bit. Psychology is hard. It makes u confront issues that u don’t want to talk about or deep thoughts that u don’t tell anyone else. But I would say GO GO GO. The weeks when I have been at my lowest are the weeks I have made the most progress. Regarding vitamins I am hoping someone more knowledgeable will come along but for myself I have been taking vitamins for 9 months now.

Vitamin D

Selenium

Folate

B12

Vitamin B complex

Vitamin C

Zinc

Pro biotic

Magnesium

Milk Thistle for my poor liver

I have only started Iron recently as my ferritin was elevated with Graves’ disease.

Before starting the vitamins you do need to get tested so u know where u r in the ranges and also start the vitamins one at a time and not all at once. That way if u don’t tolerate a vitamin u will know which one it is.

I am not incredibly knowledgeable but this forum has been a lifesaver and I have made a lifelong friend on this forum who has just been the most amazing support you could ever ask for.

Any questions always ask. Good friendly and knowledgeable people here for u

[Buddy195 Administrator in reply to Shellsbells22]

I was diagnosed with ‘health anxiety’ & saw a psychotherapist for ages. It was only joining this forum that helped me realise that many of my symptoms were thyroid related. When thyroid meds & key vitamins were optimal, my anxiety diminishes greatly. It saddens me that Medics are so keen to offer anti depressants & not try to find the root cause.

My sessions with the psychotherapist were not in vain. I got quite a bit from the CBT ones & I continue to write positive affirmations and practise mindfulness. I like the Mark Williams App & it’s easy to follow. It’s a good app to have on your phone when you are out & about & feel a little stressed.

[Shellsbells22 in reply to Buddy195]

Thank yiu xx

[NIKEGIRL]

Find the dr who actually listens to you. The dr who is proactive for u. I have been the worst patient and pissed my dr around. Been non compliant on drugs. Cried myself inconsolably in front of him. Laughed with him. He is just fantastic. Sadly he is leaving for 6 months and plans to come back but he may not. 😩 crying emoji. Really quite sad. I have 2 appts with my lovely dr before he leaves 😩 Psychologist is not going anywhere though.🥰 The psychologist we use is an absolute LEGEND 💪🏻and ROCK STAR. 🏆 I just love our psychologist. He is worth every dollar I pay him. 🥇

[Shellsbells22 in reply to NIKEGIRL]

Thank you for your help xx

[pennyannie]

Hello Shellsbells and welcome to the forum :

The thyroid is a major gland, the body's engine and the controller of all your parts, including your physical, mental, emotional, psychological and spititual well being, your inner central heating system and your metabolism.

I was diagnosed hyperthyroid 4 months after being physically threatened and verbally abused by a man I employed as my assistant manager back in 2004. I was told very little by my doctor who put my on Carbimazole and the local hospital took over my treatment. I knew very little throughout my treatment and only started my learning curve when I found this amazing forum in around 2015 and had read a few books on the subject of Graves Disease which was what I was told was my diagnosis back in 2004.

When the thyroid comes under attack from antibodies, your T3 and T4 thyroid hormones rise above the range and the symptoms expressed can be mild to wild :

Your mental and cognitive function can be severely compromised : you maybe eating for England but loosing weight: you maybe exhausted but feeling as though you can't turn off. Insomia maybe keeping you awake, you may have dry gritty eyes, you maybe exhausted though wanting to go running, as your metabolism is running faster than normal and causing havoc within your body.

Which is why it's also important to try and maintin your core strength vitamins and minerals as your body is running too fast to extract your vital nutrients from your food.

The Carbimazole is an antithyroid drug, prescribed to block the T3 and T4 thyroid hormones rising any further and slowly these 2 vital hormones will drop back down into the range and your symptoms be relieved.

I would think that because of the current climate your doctor is liaising with an endocrinologist at the hospital and probably undertaking more treatment than usual in this specialised field.

If diagnosed with Graves Disease this is considered life threatening if not medicated so most likely why the Carbimazole was prescribed in the first instance.

However if your blood test has come back and Graves antibodies are not positive and over range you might actually be dealing with a different thyroid autoimmune disease - Hashimoto's which initially starts with similar symptoms but where an antithyroid drug is not a prescribed treatment.

The only way to know what you are dealing with is to ask for the medical evidence and have a copy of the detailed report showing which antibodies are over range and positive, and your T3 and T4 blood test results at diagnosis, and post it all back on here, the results and ranges, in a new post, for considered opinion.

The antibodies unique to Graves Disease are generally written as a TSI ( a thyroid stimulating ) and or a TR ab ( a thyroid receptor blocking ) - these antibodies can be both stimulating and or blocking and you may well experience symptoms of both hyper and hypo which can cause further confusion for the patient.

If you go onto the Thyroid uk website, who are the charity who support this amazing forum you will find further information on all autoimmune thyroid diseases and this might be a good place to start until we know for sure which antibodies are active and causing your current health issues.

[Shellsbells22 in reply to pennyannie]

Thank you I am going to get all info from doctors on Monday morning xx