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Old 02-02-2005, 12:39 AM   #1
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kiya HB User
Endo - extremely UNhelpful

I took my thyroid results with me, along with a list of symptoms I've been having and stuff I've been taking to try to help with how I'm feeling.

He called the doctor I'd had my tests done with a 'quack' for suggesting a trial of thyroxine to help as my TSH was 3.3. He then did a check-up (I have to admit this was pretty thorough) and pronounced I have Chronic Fatigue Syndrome. He said there are three options: antidepressants, cognitive behavioural therapy and graded exercise. Hmm, if I'd wanted a textbook answer, I would have gone to the library. He basically parroted a load of stuff he must have learnt at medical school.

He told me that all the tablets I was taking to help wouldn't do anything, but then offered me absolutely no idea as to what I could do to help myself. Antidepressants made all my symptoms worse. I'm already doing plenty of exercise. That only leaves CBT, but my family say they don't think there's anything wrong with my state of mind.

I have a doctor who thinks low-grade fever is causing my freezing cold hands and feet (?!) and an endo who thinks this is caused by CFS, despite it predating it by almost a year (?!). The endo said my cholesterol is too high and that my toenails splitting in two horizontally is indicative of a chronic illness, but then couldn't tell me what that would be!

Help! Where on earth do I go from here?!

kiya

 
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Old 02-02-2005, 06:44 AM   #2
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lillypad HB User
Re: Endo - extremely UNhelpful

Did either of them do Free T3 or Free T4 or antibodies? If not, you don't have a complete picture of what's going on. I'd call them both and see who will run those blood tests and go from there. If I were a betting woman I bet on the 'quack'. You symptoms sound curiously hypothyroid. There are many docs who acknowledge CFS and FMS as thyroid related syndromes, and relief is found with medication and supplements.

Not sure what tablets you are takings, but CoQ10, B vitamins, and acetyl-l-carnitine are all good supplements for CFS. If you are peri or post menopausal, it might be warranted to have your DHEA-S tested. If that is low, DHEA is a simple supplement to take with great results.

I've been to several endos, I've not been helped by any. My internist is gold. I finally figured out I needed to interview the doc before committing my $ and time. I can't spending my energy if the doc isn't like minded.

The remark about your toenails - what a thing to leave a patient with. So sorry you scooped at the bottom of the barrel on the endo.

 
Old 02-02-2005, 07:24 AM   #3
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fatiguegalore HB User
Re: Endo - extremely UNhelpful

I am really sorry you had this experience. Last year when I saw my endo for the first time, she refused to put me on thyroid hormones because my TSH was in the 2's (even though I had out-of-range antibodies & all the symptoms). It is now over 3, so I am hopeful but by no means certain she will treat me. I see her tomorrow.

At a TSH of 3.3 with symptoms, the AACE guidelines say you should be treated. Keep pushing and pushing until you get someone to treat you. I agree with the suggestion of going back to the first doc. If neither one will treat you, keep looking!!!

It is ironic but true that we folks with thyroid problems have to really take control over our treatment and push for what we need -- all at a time in our lives when we hardly have the energy to get out of bed!

 
Old 02-02-2005, 09:31 AM   #4
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kiya HB User
Re: Endo - extremely UNhelpful

Thank you both for your replies.

Lillypad - I'm currently taking vitamin B12, CoQ10 and magnesium. All three seem to be helping a little. I just wish I could get rid of the "brain fog", as I find this the most frustrating of my symptoms! I had a free T3 and free T4 done - both fell well within range. No one seems to be capable of ordering me an antibodies one - my GP admits to having NO knowledge of thyroid problems and the endo says my thyroid is fine.

fatiguegalore - the AACE guidelines really confuse me as here in the UK in my area the current range is 0.35-5.5 and they probably won't change it any time soon. Absolutely crazy. Even the GP I work for admitted that no one really knows what a "good" TSH level is. He's seen patients with a TSH of 7+ that have had no symptoms and no positive affect with taking thyroxine and have stopped. Then there are others with borderine TSH levels who have symptoms and they're treated as if their a psychiatric case and fobbed off with unhelpful advice! I asked him why treat the patient who feels well and ignore the patient who is ill?? He had no reply...

I wish you luck with your appointment tomorrow - I'll keep my fingers crossed that you get the treatment you need.

kiya

 
Old 02-02-2005, 10:35 AM   #5
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lillypad HB User
Re: Endo - extremely UNhelpful

Hey Kiya, if you have the Free T results, post them, as well within range doesn't really count anymore than 'normal' TSH!

How is your sleep? Non refreshing sleep can certainly be a cause of brain fog.

You might see better results if you take a B complex as opposed to only B12. The B vitamins do a lot for the brain.

Dr. Jacob Teiltelbaum has a great book "from fatigued to fantastic" - and a web site also. I found my angel doc through his website, and if I remember correctly, there are some UK docs, or at least a category for them. Take a look. His ideas on the brain fog are pretty interesting. I've been taking his daily supplement for several weeks and starting to feel so much better. Hope you find some relief. Thyroid plays a part, but other issues can also.

The new guidelines are just that - guidelines. I would go to that website and make a copy of this info and stick in your purse so you have it next time you go to the doc.....or better yet, go to the 'quack'!

 
Old 02-02-2005, 11:24 AM   #6
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kiya HB User
Re: Endo - extremely UNhelpful

My results were:
TSH 2.17 (0.35-5.5) - this was done in November by my GP

The following was done by the "quack" in January:
TSH 3.3 (0.4-4.0)
Free T4 15.3 (11.5-23.0)
Free T3 5.0 (2.1-6.0)

My sleep is really good - I have at least 8 hours every night and would probably sleep during the day if I didn't force myself to get up!

I'll certainly take a look at Dr. Teitelbaum's website.

Thank you!

 
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