My story so far, New-ish and seeking further advice

[Monty2018]

Hi all,

Towards the end of last year I was suffering with a number of things that I didn't realise were all related to a condition with the Thyroid, I had found reasons that I could associate everything with, for instance, tiredness - New baby, Cramps - not drinking enough water, my wife insisted I went to the GPs as she was suffering with my excessive snoring and was shocked by my ability to sleep anywhere, almost instantly nodding off.

I wrote a list while waiting an hour for a walk in appointment at the doctors, the following was what I came up with;

Tiredness - generally looking run down and bags under eyes but getting 7-8hrs sleep.

Get to sleep in minutes really easily of putting head down.

Snoring

Cramp in legs when first wake up, random cramping in hand. Cramp in neck.

Hands cracking, leathery skin: back of hands near knuckles. Feet the same on base and sides only.

Chin swelling

Speech slurring and slowing at times, have to really think about what words I need to say.

Back ache in centre when walking small distances. Arm muscle ache pulled at times, simple over reach or slightly awkward reach but painful muscle pain for 5 minutes.

The Nurse Practitioner abruptly informed me "we don't do lists" but then jotted down all I had to say, as I informed her, I do! she diagnosed me initially with Sleep Apnea and gave me a form for a blood test the following day with a referral to the sleep clinic.

The following day I had the blood test and carried on as normal, that evening I noticed the house phone had an answer machine message and it was the out of hours doctor informing me my results had been returned and I needed to see my GP first thing in the morning.

I visited the surgery in the morning and was given an appointment with a different nurse practitioner, they read my notes and informed me my results were showing a possible under active thyroid, I was sent for a second blood test that morning. I recall being told that my levels were less than 1. That afternoon I received a call from my GPs and was informed by the secretary that I had a prescription waiting to start me on a dose of 50mcg immediately, and a blood test in 2 weeks time.

following the second blood test I arranged for a call back with the GP, I was called that evening and informed that my dose was now 100mcg and a new prescription was waiting, next blood test 6 weeks.

my last blood test was a week last Friday 25th Jan, and the surgery arranged an appointment for last Thursday. I was confused initially as the doctor was talking about cholesterol and asking what medication I was on to reduce it, to which I explained I was here regarding my thyroid and was taking no medication other than thyroxine. I was informed on an early blood test my cholesterol was at 8.9 and now it was 3.9, following some guidance I had picked up from this site on reducing gluten I have changed my diet and put it down to this, my thyroxine was upped again to 125mcg and he told me the level was 9.1. new prescription and blood test in 3 months.

the following day I received a letter dated the 28th Jan informing me some test had been missed off and I was required to have my T3, T4 and TSH checked.

So now present day I am confused and don't have a lot of confidence in the GPs, I don't know what I should be asking for or what I should be looking out for and so I turn to this group to guide me. I need another blood test and I am guessing the 1st piece of advice is to get a copy of all my results so far.

[Gcart]

You need someone better than me , but first thing is to ask for the print out of the tests you have had . Its your right to have them . Post them here and the best info for you will come along from these wonderful people who have so much knowledge Good luck

[Catseyes235]

Please don't lose faith in your doctors. From what you've described and compared to my and many people's experience they sound very much on the ball as they have been proactive in driving treatment and contacting you. Remember doctors are not all seeing all knowing and they have to disentangle results and symptoms which may be intertwined or completely separate. In the case of thyroid and hormonal problems, patience is required I'm afraid before attaining optimum health.

I have found that men often get taken more seriously where it comes to thyroid disease as we women are still viewed as hysterics who are weight obsessed, cranky, tired blah blah and can have a battle (while feeling rubbish) to have our symptoms acknowledged - so count your blessings!!

Yes do get full blood report and also describe how you're feeling. Good luck - it can be a bit of a long journey.

[m7-cola in reply to Catseyes235]

I agree. This response from your GPS is more effective than we usually see on this forum. But if I were you I’d be learning/reading about hypothyroidism so as to be better informed. That way you can help yourself, too. Check out the Thyroid UK website for a start.

[Catseyes235 in reply to m7-cola]

Hi - I take it your partly replying to Monty2018 as I've had nearly 50 years of exploring the highs and frequent lows of hypothyroidism!! There should be a t-shirt!

[m7-cola in reply to Catseyes235]

Yes. I was agreeing with you and recommending reading to Monty. Sorry if it didn’t look that way!

[SlowDragon Administrator]

For full testing of thyroid you need TSH, FT3 and FT4 plus both TPO and TG thyroid antibodies to see if cause is due to autoimmune thyroid disease also called Hashimoto's

Very important to test vitamin D, folate, ferritin and B12 too . These are very often too low. Ask GP to test vitamin levels if not been done

Also you need thyroid antibodies tested. GP may agree to test. NHS will usually only test TG antibodies if TPO antibodies are raised.

High cholesterol is linked to being hypothyroid. It is already dropping now you are being treated

nhs.uk/conditions/statins/c...

Sleep apnea is linked to being hypothyroid too.

thyroidpharmacist.com/artic...

verywellhealth.com/thyroid-...

[Hidden]

I don't understand why you were retested so frequently. Unless your blood levels were dire, or your thyroid almost non existent, it seems strange - even dangerous - to have your thyroxine increased so much so quickly. I started on 25 mcg, and it was raised about every 2 months to 100 mcg. Then it was lowered again to 100/75 on alternate days. I still don't feel much better though

Do you feel better now? Have your symptoms changed, increased or decreased?

It's good that the doctors are taking you seriously and trying hard to get things sorted. I made a list of parts of your post to comment on, to try and get some picture of what is happening! Will put them in a separate message.

[Hidden]

“my levels were less than 1”

Levels of what?

When you post your blood test results, remember to include the reference ranges - usually in brackets after the result. For example "TSH 5.2 (0.35-4.7)"

And by the way, you are legally entitled to free print outs of the results, or you can access them online from some surgeries.

“50mcg immediately, and a blood test in 2 weeks time.” That seems very soon, 6-8 weeks is the norm for thyroid testing as it takes several weeks for thyroid levels to adjust.

“following the second blood test I arranged for a call back with the GP, I was called that evening and informed that my dose was now 100mcg and a new prescription was waiting, next blood test 6 weeks.”

Was that after the test at 2 weeks?

“I was informed on an early blood test my cholesterol was at 8.9 and now it was 3.9”

High cholesterol is typical of hypothyroidism. It should go down when you start thyroxine, but 3.9 seems a very steep decrease. Have they put you on statins as well. Not a good idea unless you've had a heart attack.

“my thyroxine was upped again to 125mcg and he told me the level was 9.1.”

Again wondering how long since the increase to 100mcg. Was 9.1 the level of TSH? If that has come DOWN from the previous level it must have been dire to begin with! Ideally TSH should be under 1 for most of us with hypothyroidism.

“some test had been missed off and I was required to have my T3, T4 and TSH checked.”

They actually did your T3?!!!! That is almost a miracle if you live in the UK.

“So now present day I am confused”

I'm not surprised!!!

By the way, I have no medical training, all the above comments are based on what I've learned on this forum.