self medicating - hypo

[Exetergal]

it’s a bit of a long story, but I was hypo - didn’t know the range, but my GP said my thyroid gave up the ghost. This was 10 years ago and mediated 175 thyroxine a day, I had to have bloods a few years ago and a new GP told me I was euthyroid and stopped my thyroxine! Which I wasn’t happy about, tried to inform them it was because of the medication! Didn’t listen, so I stopped going and started ordering Levo online with my own private blood tests. This was after 9 months to a year of no levo, which I was really suffering.

I didn’t automatically put myself back on a high dose, I started with 50 and tested every 3 months. Also, started folate / b12 / vit d & k12 and zinc. Thyroid numbers were great and I felt really good, well I’d been a bit slack and just continued the 50 mg per day. Started losing hair and having Palpitations again - even had a couple panic attacks at night in bed.

Had a private test at 9am and my results as follows:

5.2 pmol/LFT3 levels normal (normal range 3.1 - 6.8 pmol/L)

12.5 pmol/LFT4 levels normal (normal range 12 - 22 pmol/L)

5.01 mu/LTSH levels high (normal range 0.27 - 4.2 mU/L)

this was taken last Thursday, results available Friday.

I’m wondering if anyone can advise if it would be prudent to adjust by 25mg extra a day and retest in 3 months or whether to increase by 50 please? I didn’t have my antibodies test, they’re always in the thousands so doesn’t tell me anything new. I did however have cholesterol, which apparently is high. I’m 39 and guess a little chubby, but didn’t expect to see that.

CHOLESTEROL29/09/20225.4 mmol/LTotal cholesterol is made up of all of the cholesterol subtypes, good and bad, in your blood. In general the lower the number the lower the cardiovascular risk. Your total cholesterol result is more than 5 which means that you have an increased risk of developing cardiovascular disease. You should consider lifestyle and dietary changes to work towards lowering your cardiovascular risk.

above is message regarding cholesterol from monitor my health. Guess higher cholesterol can rise due to my thyroid, hoping the next test lowers.

Before anyone says please see the GP, I will not go anymore. I am under an immunologist, if I really need to discuss with a medical professional then I will contact them. The GP has not only been a massive waste of time, but would not reinstate the levo - even when it was completely out and I felt like I was dying! I am happy to pay for the levo and blood tests to ensure I feel myself.

Thank you

[SeasideSusie Remembering]

Exetergal

Levo should be increased in increments of 25mcg, even lower amount when nearing optimal dose. So yes, 25mcg now, retest in 2-3 months.

High cholesterol is a symptom of hypothyroidism. It could very well sort itself out when you are optimally medicated.

Your raised antibodies confirm Hashimoto's (autoimmune thyroid disease) which is the most common cause of hypothyroidism. This can cause levels to fluctuate and you may swing into a false hyper period then swing back again, it might mean you need to adjust your dose at these times.

Some Hashi's patients find that a gluten free diet helps, no guarantee but maybe worth trying for a few months.

[Exetergal in reply to SeasideSusie]

thank you very much for the information. I will keep a much closer eye on blood work and go up 25 I used to get heart palpitations every time my thyroid was high, it’s been 0.27 and I never felt better. No palpitations at all, that’s how I knew it wasn’t right. Hashimoto’s is so weird how you can get symptoms for both isn’t it.

Thanks again

[pennyannie]

Hello Exetergal :

You might like to read around Hasimoto's and many refer to the research and work of Dr Izabella Wentz who has this auto immune disease.

Just a thought as I'm with Graves post RAI thyroid ablation and self medicating.

[Exetergal in reply to pennyannie]

oh thank you, I will certainly have a look.

[SlowDragon Administrator]

Important to test vitamin D, folate, ferritin and B12 at least annually

What vitamin supplements are you currently taking

[Exetergal in reply to SlowDragon]

Vit d was tested, 90 and above normal. I take quite a few supplements:

Zinc, b12, folate, biotin (stop before tests), selenium, d3 and k2. My b12, folate and vit d were extremely low back when I felt awful. Which is when I started self medicating for all. B12 and folate are normal now.

[SlowDragon Administrator in reply to Exetergal]

Are you in U.K.

Is vitamin D 90nmol ? Or 90ng/ml if not in U.K.

Actual B12 and folate results?

[Exetergal in reply to SlowDragon]

VITAMIN D29/09/202290 nmol/LGood news, your blood test result suggests you have optimal vitamin D concentrations to maintain muscle and bone health. Keep doing what you are doing!

Above is monitor my health results from Friday. I’ve not had my b12 and folate retested for a year, but last time they were both above normal and I’ve continued with the protocol. Think should be ordering a full vitamin test?

[SlowDragon Administrator in reply to Exetergal]

can you add U.K. on your profile

So vitamin D is good. Many of us try to maintain vitamin D between 100nmol-125nmol

Yes it’s good idea to test thyroid and vitamins via Medichecks or Blue horizon once a year…..check folate, ferritin and B12 at least annually

Ideally vitamin D twice a year

[Exetergal in reply to SlowDragon]

thank you for your help. Sorry, I didn’t realise I didn’t have a location on the profile. I’ll have a look and see if I can add U.K. on. I will get a test ordered, I had previously been told once I had started the protocol not to retest, I did after a year and they were both above normal. I’ll get a test ordered, thank you again.

[Exetergal in reply to Exetergal]

oh and i used monitor my health as it’s at my local RD&E, so I could drop the samples off. Pretty sure I’ve used blue horizon for the full checks before, so I’ll have a look

[CSMMUM]

Hi Exetergal,

“new GP told me I was euthyroid and stopped my thyroxine”

Time to change GP, outrageous taking you off Levo. If they had bothered to look up the Nice guidelines the GP would have realised he was condemning you to a life of misery and debilitating illness. Good luck finding a better one🤞 and hoping you feeling better with dose adjustment 😊.