U.K NHS Frustrations

Training Over 35 Lifter
1

O.K, I apologise in advance for the rant but I need to vent.

Like a few of us around here I have secondary hypogonadism. To cut a long story short over the course of nearly a year I managed to convince my docs that a shorter acting test ester, self administered in divided doses throughout the week would, be the best option for me to treat my condition. For the record, getting the Drs to actually recognize that there was one in the first place was a challenge in itself.

So I get a prescription, convince them that 100mg per week is a good place to start and I am left to self administer with periodic assessments, every 3 months or so. Good stuff.

However, intituitively, I knew that something was stil awry. ALthough a good 60% of my symptoms diminshed (great!) a rough estimate would be that 40% persisted. So I decided to run a few labs, additional to those that NHS would fund at the time.

Well, results of a couple of thyroid function tests, over a 3 month period (I decided to test twice over this time to have a series of data that I could present and not just an isolated result) revealed that I may also have secondary hypothyroidism.

1st results (end of last year)

TSH: 2.5
fT4: 16.1
fT3: 3.1*

2nd result (a couple of weeks ago)

TSH: 3.58
fT4:17.0
fT3: 3.3*

(data is in SI units!)

  • = low

Armed with my data, a handful of studies for reference and a little bit of optimism, I see my endocrinologist and present him the data, discuss my theories and describe my symptoms.

Sadly, this feel on deaf ears. Although in both instances my TSH is clearly elevated and my fT3 is low - by the private lab’s reference data I used to run the test - they were not outside the lab reference values for the area I live in (by 0.1 and 0.3 pmmol!)

For those that do not know, in the U.K we often play a ‘postcode lottery’ when it comes to these things. Although the NHS stands for the National Health Service, different counties may have different criteria for services. For me, this means no treatment for my thyroid given the data. Clearly another sad case of treating statistics and not symptoms.

Thus I am left with low temperature, cold intolerance, yellow pigmentation, brain fog, irratability and an ever growing disdain for a failing health service.

O.K, rant over - sorry :slight_smile:

3

[quote]bushidobadboy wrote:
Self medication time, my friend. Thyroid hormone is mercifully cheap.

Personally I would say "I have presented you with sound clinical reasoning, backed up by symptoms and evidence, yet you choose to ignore the facts, due to some fairly arbitrary ‘normal’ range. s a result, you leave me with no choice but to self medicate. I will be informing my solicitor of this uinfortunate neglect by you and of my anavoidable course of action. If anything goes wrong with y self treatment, he is under instruction to persue you personally.

You may feel justified it not treating me, simply because I am fractionally in range, however with the information I have provided you already, relating to the clinical rationale of why you have a duty to treat me, I feel sure (as does he) that your arse will be barbecued."

Actually I probably wouldn’t say that, but hey, I’m feeling agressive today (I have my reasons, having been screwed over myself by those in ‘authority’.)

BBB[/quote]

I love it, fear is an awesome weapon. Fear of the unknown is an awesomely powerful weapon. Best of luck.

4

[quote]bushidobadboy wrote:
Self medication time, my friend. Thyroid hormone is mercifully cheap.
BBB[/quote]

Sadly, I feel you may be right. Strangeley, our meeting actually followed a similar pattern to the one that you describe, although I did not threaten legal action.

Now I am not surprised by this, the situation didnt upset me personally, as Thryoid hormones are yes cheap and easily attained. What bothers me though, is that when we think about it, this is an example of personal bias and a lack of education and consideration for a patient clearly in need of treatment, cloaked under the familiar banner of ‘reference ranges’. The endo did not see the link between hypogonadism, hypothyroidism and low free t3. This is pretty common knowledge. The endocrinologist wasnt aware of this link and was probably not comfortable with the situation.

The reference range excuse is in fact bollocks. My GP prescribed me Testosterone while outside the normal range, so the fact that he did not provide a prescription has nothing to do with legislation.

I guess my request for Armour Thyroid would be out of the question then?

I dread to think what the reaction would be if I showed him my IGF-1 data?

LOL!

6

Damn, right. And I think it has something to do with this culture we seem to have with establishment and authority.

People in the U.K fear authority! Heaven forbid that a patient question an opinion, or worse yet, form their own!

For years Drs and the like have been viewed as some sort of superior citizen based on their career path. And it seems that far too many believe this rubbish too.

It drives me insane. I lecture at a University and I see it in my students. I challenge them to challenge me. It helps me learn and it helps them too.

There isnt a single day yet I have worked where a student hasnt said or done something that has suprised me, or, where I havent learned from them.

[quote]bushidobadboy wrote:
Indeed, personal bias and lack of education have caused your Dr to neglect your wellbeing.

Bias and ignorance have no place in healthcare IMO.

Sure, there are subjects that we all have weakpoints in, but we must be prepeared to fill in the blanks in our knowledge base for the good of the patient.

Open minds, not closed ones.

BBB[/quote]

7

It took you one friggin year to get help!?! That is so fooked up! I’ve just started seing a doctor here in the UK for the same reasons, and I sure won’t wait ages until I can deal with these problems.

I do see many benefits with self-medicating, but there are some drawbacks as well.

Firstly, you have very clear about your diagnose since TRT is a big commitment and a lifelong treatment.

Also, correct me if I’m wrong, you do need to do a lot of work fine tuning your protocol. That means a lot of bloodwork. Surprisingly expensive to test here if you do it outside the NHS.

My work involves a lot of travelling - back & forth between England & Scandinavia. Without a prescription, I would have to smuggle these drugs across borders. I’d rather not get into any legal problems with customs.

Or what do you say?

8

Yes it is a fine tuning experiment, no two people will respond in the same way to treatment. Some will require a higher amount to treat their symptoms, some lower. Some do fine with transdermals, some with depot shots.

If you are truly hypogonadal you can get a prescription (I have). And you can get a decent estered product if you convince your Drs this is the best option for you.

Testosterone replacement is in its infnacy in the U.K and you will probably find that you are more informed than the Drs you seek for consulation.

In my case I persuaded the Drs that i didnt want a transdermal due to me being active and perspirating and sweating a lot (I’m a proverbial gorilla too!).

The next option was Nebido (undecanoate). As a long acting ester the prescription dosage is quite for this particular product. In the end I had a prescription for sustanon 100. Recently this product was discontinued and I have now obtained a prescription for Viromone (propionate).

I would never suggest that anyone self medicates. It is literally a shot in the dark. And in your case, this is really not an option for you.

In my case, I have data that shows I have an underlying problem. O.k this particular Dr didnt recognise it, however, there will be Drs that do. I will just search until I find one that will prescribe me the treatment I require. In the meantime I refuse to live my life with reduced quality. At this stage now, I dont really put a price on my wellbeing so the cost of tests and treatments is simply a means to an end.

Personally, I lost a significant portion of some pretty formative years in my life to this(I realise this now, I have had these problems and symptoms for 5 - 6 years and I am 28) I dont want to continue on this path.

[quote]mancandy wrote:
It took you one friggin year to get help!?! That is so fooked up! I’ve just started seing a doctor here in the UK for the same reasons, and I sure won’t wait ages until I can deal with these problems.

I do see many benefits with self-medicating, but there are some drawbacks as well.

Firstly, you have very clear about your diagnose since TRT is a big commitment and a lifelong treatment.

Also, correct me if I’m wrong, you do need to do a lot of work fine tuning your protocol. That means a lot of bloodwork. Surprisingly expensive to test here if you do it outside the NHS.

My work involves a lot of travelling - back & forth between England & Scandinavia. Without a prescription, I would have to smuggle these drugs across borders. I’d rather not get into any legal problems with customs.

Or what do you say? [/quote]

9

It sucks that it took so long to get treatment. Hopefully you are better now.

Anyway, what’s your view on going through a private clinic?

I went to my NHS doc on tuesday. She will send me to an endocrinologist - but it takes about a month just to get this Endo appointment. So its taken me a month to get the initial bloodwork out of the way, another month to get the endo work. It will probably take some time after that before I get any treatment. I am getting impatient.

Some of the clinics here in London to almost all the tests and consultations for around 650 GBP. The montly costs thereafter are about 30-60 pounds, they claim.

Thoughts/comments???

10

All this reference range bullshit is present everywhere because doctors are in fact pseudo-experts not real experts. They know what to do but rarely know why. Hence the rigid rules (made worse by the bureaucracy and cost constraints).

If you look at medical training not enough emphasis is placed on understanding and most of it is regurgitating “facts” and procedures. To be fair, they can be forgiven for skipping on the understanding given the volume of knowledge they need. However, they shouldn’t be forgiven for having closed minds and an exaggerated sense of worth.

It pisses me off whether the pseudo-expert is a doctor, nutritionist or coach. In fact there are people like this in every walk of life. Some of the pseudo-experts are just plain dumb, like the obese nutritionist who was giving my father advice that was plain wrong.

11

The NHS is rarely beneficial in my experience as well.

Recently had to see a ‘specialist’ about my reoccurring shoulder dislocations. He wouldn’t listen to a word I had to say once I told him i trained at a gym. I suddenly became your average gym rat who spends all his days bench pressing and curling.

The advice I walked out with…

“Try pressups against a wall, when you can do 10, try them on your knees…”

Now that is just offensive to me. I bet that treatment is recommended to every single demographic with a similar problem. I obviously need to eat more if i look like i might have to ‘try’ 10 wall pressups. Bah