Update and Info

[pw1402]

On Wednesday evening I posted the following:

After feeling unwell for a few weeks my Dr. ran a number of tests, two of which was are Serum free T4 level and Serum free TSH level.

The results have appeared on-line tonight but before I contact my GP tomorrow I was wondering if someone was able to explain what these results mean:

Pathology Investigations

Serum free T4 level 3.4 pmol/L [11.0 - 26.0]

Outside reference range

Primary hypothyroid TFts results profile.

Serum TSH level > 100 mU/L [0.27 - 4.2]

Outside reference range

Thanks for your help.

..........................................................................................

Ok… so now an update and a bit of background info:

Five months ago I suffered a Heart Attack and was admitted to hospital after my partner phoned 999. I was initially Thrombolised and then the following day had two Stents fitted.

Over the course of the next five months I changed my entire lifestyle. I quit smoking, changed my diet, became more active and felt better than I had done in years.

Being only 41 this had been a shock not only to me but to my family and my GP.

My GP was excellent after the fact, followed up on me and was always there if I had any queries.

I returned to work seven weeks after my attack and though I took work easier than I had previously I became more active in my personal life; taking part in an excellent Cardio Rehabilitation Programme offered by my local hospital.

About 3 weeks ago I started to become very very tired, I was finding that I was forgetting things and I was waking up after a solid night’s sleep feeling more exhausted than I had before I had gone to bed.

I initially thought I was just doing too much at work but I was finding that I didn’t have the energy to exercise outside work as I had been doing and was not able to attend my Cardio Rehab as I was simply just feeling too shattered.

During my second week of feeling like this I took myself to the doctors; I was getting worried that something was wrong with my heart.

My GP ordered a set of bloods and an ECG. I booked in with reception to have these done, usually the bloods would have been taken within 24hrs but because I was booked in with the same nurse who was going to do the ECG I had to wait nearly a week.

From this point on I should say that until yesterday morning everything that happened, was said or done or I did is really pieced together from vague memories and what I have been told.

I remember going to have my bloods taken, I remember phoning in on Monday ill for work (I think). I was feeling drunk (and I don’t drink), I couldn’t walk in a straight line. I was becoming delusionary and sleeping all the time.

I remember getting a notification that I could view my results on-line and I remember my partner suggesting that I post them on here to find out what they meant.

I woke up Friday morning in Intensive Care after being taken off life support and incubation.

•Wednesday night when my results were available on-line my GP Surgery was shut.

•During that evening I became more delusionary, started hallucinating and my partner became even more concerned over my wellbeing.

•My partner phoned 999 and I was taken to A&E.

•The initial admitting nurse in A&E told the paramedics to put me in a cubical to “Sleep it off”.

•My partner kicked up a bit of a fuss (I’m probably understating that) and I was seen shortly after by the doctors – taken in to resuscitation, placed on life support and incubated.

•I was given drugs to treat me for anything and everything and received scans and everything else you would expect.

•It was explained to me that I had gone in to a Myxedema coma and that I was exceedingly lucky to be here – never mind sat up in a bed in Intensive Care.

•The on-set was virtually unprecedented. My blood tests from 4, 8 and 12 weeks prior (which had included Thyroid tests) were all within normal ranges. There had been no other clinical signs until the ones I started with 3 weeks prior.

I have just been transferred to a normal ward this morning, I have been placed on 200 micro grams of Levothyroxine per/day and had a Short Synacthen Test this morning that came back normal.

I am still weak but I am feeling “clear headed” and in control. Hopefully I will be discharged on Sunday or possibly Monday.

…….So why am a writing this…. Well the good people in this forum who responded to the query over my results were spot on, it was just unfortunate that I hadn’t had chance to review the responses until today.

The progression was so quick that no doctor or specialist in my hospital (a large teaching hospital) had experienced it before first hand.

If this information helps anyone – even slightly – then it is worth sharing.

Paul

[SeasideSusie Remembering]

(( pw1402 )) What a journey you've had. Thankfully you've come through the other side and you have a diagnosis of hypothyroidism and are now on a decent dose of Levo.

Take note of what was said in the other thread about future blood tests, also about how to take your Levo. It doesn't matter what time of day/night you take it, just make sure it's on an empty stomach, one hour before or two hours after eating.

If you get the vitamin and mineral tests done that were suggested (always a good idea) then you can come back with the results and members can advise if they are all optimal, which they need to be for thyroid hormone to work properly, and if there are any deficiencies then suggestions can be made for supplements.

Hopefully you'll be home tomorrow. All the best with your recovery from your recent episode.

[sunny-64]

So glad to hear your on the mend ,your poor partner must have been frantic ,im new on here myself ,but can already say iv learnt more on here than any information given by my GP ,its a god send this site ,il be forever grateful for all the help iv had ,hope you soon get back to being your healthy and happy self , best wishes L

[Hidden]

Wow. What a story. If your partner has the time, perhaps a letter could go to the hospital asking for the A&E nurse to be retrained, because he or she would have killed you if your partner had not been both there and assertive.

[galathea]

Thank you Paul for letting us know.... Sounds like you have rather been through the mill, but its interesting to hear how you felt, and was assumed to be drunk.

I'd be interested to see the results of the thyroid tests which were done 4, 8 and 12 weeks earlier..... I wonder if they were going on just tsh, which, as you have found out, is a dangerous thing to do as in the uk, the reference ranges are set far too high..... In other countries you get treatment when tsh reaches about 3, but in the uk you are treated when tsh reaches 10, or you are in a coma, whichever happens first.

In my reply to you on wednesday, i wrote....

.......You need meds , not more waiting time.... If your doctor doesnt hive you any tomorrow you need an urgent referral to an endocrinologist and a new doctor.

I hope you are able to question your doctor about the earlier test results.... A tsh of 100 surely cannot come out of the blue.

Wishing you a speedy recovery, and make sure your free t3 is tested.....

G x

[humanbean]

Delighted to hear that you're on the mend and coming out the other side of a dreadful experience.

When the time is right and you feel well enough you might want to start learning about how the thyroid works. I wonder if you are at greater risk of going into a coma again, having it happen once already. The more you know about your own condition the better for you, I think. (This is true for everyone with a thyroid condition, not just people who have gone into a coma.)

I'd recommend Dr Peatfield's book to start with :

amazon.co.uk/Your-Thyroid-H...

You may not be aware of this, but giving up smoking may have been a factor in you developing hypothyroidism. Lots of people on here mention that they developed hypothyroidism within a few weeks or months of giving up the evil weed. Unfortunately, taking up smoking again doesn't make hypothyroidism go away. As you can imagine, a few people have tried!

[shaws Administrator]

How awful for you Paul and frightening for your partner. A good job you don't live alone.

They had never tested your thyroid hormones but tried to sort our your clinical symptom (heart) as you didn't have enough hormones to drive your metabolism probably for years it would seem to me. You have to be pretty short of thyroid hormones to go into a Myxedema Coma.

It's shameful to say the least.

For sure just make sure they will give you T4/T3 and not levothyroxine alone as T3 is the active hormone required in all of our receptor cells.

I wish you a speedy recovery.

[SlowDragon Administrator]

The initial suggestion, a few years ago that giving up smoking might be a catalyst for becoming hypo, ..........this idea is gaining ground & evidence ........for 1000's of us it does seem to be relevant.

verywell.com/cigarette-smok...

[SlowDragon Administrator]

ncbi.nlm.nih.gov/pubmed/226...

"Official" research, the last paragraph very clear ......

The risk of having overt autoimmune hypothyroidism diagnosed is more than 6-fold increased the first 2 years after cessation of smoking. Clearly, smoking cessation is vital to prevent death and severe disease. However, awareness of hypothyroidism should be high in people who have recently quit smoking, and virtually any complaint should lead to thyroid function testing.