Welcome, Guest
Username: Password: Remember me

TOPIC: Called for FSH results...

Re: Called for FSH results... 10 years 8 months ago #19

  • clothcase
  • clothcase's Avatar
  • OFFLINE
  • EiR Junior
  • Posts: 20
  • Karma: 1
Hi Maff,

Below is the correspondence between me and the specialist. I must say I am unsure what to do as I am concerned about any side effects taking something that is 'not going to work' as he says. BTW, did I send you a copy of my results? If not I will forward them to you privately.

Meanwhile I am keeping my fingers crossed for you re Breakspear and the conversation with your GP. Thursday is only a couple of days away and I so hope they finally give you the breakthrough you are long overdue as far as this is concerned:cheer:

ME:- Thank you for responding with the results so promptly. Whilst I
acknowledge that I am indeed disappointed that there is no definitive and obvious answer to what I am going through via my bloods, my main feelings of
disappointment are due to the fact that I am nevertheless still suffering with the symptoms that I discussed with you and quite frankly feel left in the abyss as far as what I should do now is concerned.

I have spoken to people who have had a variety of experiences in terms of the length of time it has taken them to be diagnosed and the method of treatment thereafter. A common theme is that for many who have had normal bloods that have continued to have the symptoms, when they are eventually treated, their symptoms improve. What perplexes me in all of this is that as far as I can see, different counties treat and prescribe patients differently which is extremely frustrating. Why also is it that whilst there seem to be quite a significant amount of positive responses in trials where people have been treated in terms of symptoms alone rather than on any blood samples, and the evidence shows that those left untreated either stay the same or deteriorate that nevertheless treating symptoms alone have not become more common place?


HIM:- Good afternoon, I am really not sure how I am to respond here. I realized
that you would be disappointed, but I have shown what is the reality, which
is that there is no evidence from my investigations of any endocrine and
specifically thyroid disease. The TSH is in the low normal range. If you
were hypothyroid, the T3/T4 would be low, and the TSH high, and if you had a rare disorder such as pituitary hypothyroidism, the T3/T4 would be below normal range. I'm not sure what you mean by your 2nd paragraph, are you requesting to be treated with a clinical trial of thyroxine to see if that
makes you feel better? I am quite happy to do this as a clinical trial, but
do not believe that it will have any effect. If you want to try this can I
ask you to come to see me so that we can discuss this fully.

Would love to know your thoughts on the matter Maff as I do value your opinion.

Thanks
The administrator has disabled public write access.

 

 

Re: Called for FSH results... 10 years 8 months ago #20

  • Maff
  • Maff's Avatar
  • OFFLINE
  • Administrator
  • Posts: 906
  • Thank you received: 24
  • Karma: 17
Hi clothcase,

I have to say well done for having the courage to not pull any punches in your message to your specialist! I often have trouble doing what you have done (in person at least) as I just resign myself to the fact that they are likely to think I am crazy and dismiss what I am saying. Fact is you don't get anything without asking.

With regards to the response I have to say I'm a little confused as well - particularly by his use of the term 'clinical trial'. Technically speaking a clinical trial is an organised piece of research involving a number of subjects etc. But you no doubt know all that. What you are after is a personal therapeutic trial of thyroid medication to see if it helps you. I would ask him to clarify if that is what he meant. Also, a lot of people find that thyroxine alone doesn't help and they need the T3 as well so I'd ask if he would be willing to try combination T4/T3 therapy. Taking excessive thyroid medication will cause the symptoms of hyperthyroidism (overactive thyroid) and the symptoms of this are well defined. I'm sure your specialist will inform you about what to look out for and will be very careful to start of with a low dose and monitor your blood work.

Good luck and let me know how things progress. Thank you for the crossed fingers. I'll let you know what my GP has to say about Breakspear...
If you are going through hell, keep going - Winston Churchill
The administrator has disabled public write access.

Re: Called for FSH results... 10 years 8 months ago #21

  • Maff
  • Maff's Avatar
  • OFFLINE
  • Administrator
  • Posts: 906
  • Thank you received: 24
  • Karma: 17
Was woken up by my GP calling this morning. To make matters worse...it was bad news. Can't say it was entirely unexpected but apparently there is no financing or referral structure through which he could get me to Breakspear through the NHS. Breakspear mention NHS referrals on their website but he said he'd had a look and they offer some allergy treatments that the NHS also offers so thinks the successful referrals must be for those. The ME/CFS treatments and testing are of course not offered by the NHS...which is why I would like be referred there. Crazy world!

Anyway, I have some other things in the pipeline that I expect to be more helpful than Breakspear anyway so all is not lost :)

Hope you're doing ok and enjoy the royal wedding and long weekend!
If you are going through hell, keep going - Winston Churchill
The administrator has disabled public write access.

Re: Called for FSH results... 10 years 8 months ago #22

  • clothcase
  • clothcase's Avatar
  • OFFLINE
  • EiR Junior
  • Posts: 20
  • Karma: 1
Hey Maff,

So sorry that there has been yet another set back. I admire your resilience and perseverance however when you talk about 'having something else in the pipeline'. Kinda wish they had given you a bit more of a sense of things prior to getting you (and me for that matter :) ) silightly optimistic.

Dare/May I ask what you have in the pipeline or would you rather not say?

Meanwhile I put some of your points across to the specialist as I still have contact with him via email. One of the interesting things re rT3 he came back with is as follows:-

HIM: Interesting. We are not able to test t3 action/rT3 inaction or blockade. there are many intercepted syndromes of T3 resistance, I have ruled these out in you. It is possible that there are acquired T3 resistance syndromes, hence some people want to take thyroxine or natural thyroid hormone. this is very controversial, and the RCP London statement s informs physicians that this is not advised. If you want to try thyroid replacement we would need to discuss this fully, so you are clear what you are doing.

The more he mentions it the more concerned I become - how dangerous is this medication!!! I am also cautious now, having had the bill from BUPA for the tests that he has done thus far, this potential trial he mentions and the fact that I would have to foot the bill potentially as I cant imagine BUPA doing that and I know that we are not in a position to afford a huge outlay at this particular moment in time. I wonder how long he will honour the possibility of a trial!!!!

Right, I am off now to endure the Royal Wedding (actually I am a softie and a romantic and do enjoy a fairy tale which I anticipate this will be). Take care Maff and I pray that the next challenge is the last for you.

s
The administrator has disabled public write access.

 

 

Re: Called for FSH results... 10 years 8 months ago #23

  • Maff
  • Maff's Avatar
  • OFFLINE
  • Administrator
  • Posts: 906
  • Thank you received: 24
  • Karma: 17
Hey,

Thank you for your kind words. I have learnt enough through this illness to know that anything is possible - both positive and negative. I'm still confident positive will win out in the end!

My big hope is to correct my problems at their root (imbalance of gut microbes) using a procedure known variously as Human Probiotic Infusion (HPI), faecal transplant, and faecal bacteriotherapy. Basically it involves taking antibiotics to rid the gut of troublesome bacteria, yeast, and other bugs...and then re-innoculating it using "friendly bacteria" obtained from the stool of a healthy donor. Sounds unpleasant but the theory is sound and it is producing some remarkable results. It's mainly been used for drug resistant C. difficile infections but is now being used for other conditions including IBS and chronic fatigue syndrome. Fingers crossed!

I have to say it's great that your specialist is happy to correspond with you via email on an ongoing basis. I am sure many wouldn't be. He also sounds very progressive with his views on T3/rT3 so I think you've stumbled across a good one here. I can't make the decision for you but if it were me I would take up the offer of a treatment trial while it is on the table. You will find lots of information online about potential side-effects of thyroxine and T3 medication (Cytomel). Always wise to do your research so you know what to look out for. There are some that are potentially serious but if your dose and treatment are monitored by the specialist they shouldn't be an issue.

As I thought it sounds like your specialist is suggesting a therapeutic trial (rather than involving you in a clinical trial) so I suspect you would simply pay consultation fees and the cost of the medication (next to nothing for thyroid meds).

Hope you enjoyed the royal wedding. I have to admit that after moaning about all the ads about it on TV over the past few weeks I ended up getting caught up in it a bit on the day!

Take care and let me know if you decide to try the thyroxine and/or T3.
If you are going through hell, keep going - Winston Churchill
The administrator has disabled public write access.

 

Related Articles:

 

Home Testing & Sanitizer:
 

 

 

 

 

ADVERTISEMENT

 

Time to create page: 0.162 seconds