So tired

[UK68]

Hi

I've had long term problems with tiredness - going back to when I was about 20.  At times it gets so bad I can barely function and I can't remember the last time I felt energetic.  About 15 years ago I had a test which showed raised TSH and normal T3/T4.  The test was repeated 3 months later, and TSH had dropped again.
Last November my thyroid was tested again, and again showed raised TSH only.  Got retested last week and TSH has gone up further.  Since last November I have put on about a stone in weight.   Still tired.  Spoke to the GP on the phone this morning and she seemed happy to try treatment to see if it helped my tiredness, although felt that (apart from the weight gain) as my symptoms are not new, it was unlikely to be because of the thyroid.  Her concern was that by treating I could go hyper which could introduce new symptoms such as palpitations.  I then mentioned to her that I already get palpitations - ususally when resting - and she's now reluctant to treat.   I understand the logic that if symptoms are not new, then it may not be thyroid, but also wonder if I could have an ultra-sensitive thyroid and a small reduction in levels, whilst still in the normal range, could have been the cause all along?  Also, reading other posts on this forum, palpitations can be caused by both hypo and hyper, so doesn't seem a reason not to try treatment.  I'm prepared for the fact that treatment may not help, but I've been so exhausted for so long and if there's a chance that a pill will make me feel better I'd hate to miss it.   Not really sure what I'm asking - does anyone have experience of long term sub-clinical hypothyroidism, and did you feel better with treatment?

[UK68]

Hi again

After another year of consistent results (TSH 6-7, T4 around 12 (reference 9-24)) my GP has reluctantly agreed to try a low dosage of levothyroxine for 6 weeks to see whether or not I feel any different - she still maintains that my test results do not indicate that my tiredness/dry skin/constipation/low mood are caused by a thyroid issue.

I'm very glad to try it, and really hoping the dosage (25mg) and duration of treatment is long enough to prove/disprove that it's my thyroid.   The meds say the normal starting dosage is 50, but I'm hoping that, given that my results aren't too far from normal, 25 will be enough to make that difference.

Does anyone have experience of what dosage is required to see a result with a starting point similar to mine, and how long I will need to wait before feeling better if it is going to work?

Thanks
UK68

[UK68]

Thanks - appreciated

[gimel]

Here's another site that I thought you would get some good info from.  Note that there are multiple subjects listed on the left hand side of the page.

http://nahypothyroidism.org/why-doesn%E2%80%99t-my-doctor-know-all-of-this/

[gimel]

As a partial answer to the question about why UK doctors are so difficult to deal with on thyroid issues, take a look at this link.  The doctor discussed is supposedly one of the leaders in the UK world of thyroid.  Is it any wonder that patients run into so much resistance?  After all, according to him, when the TSH is within the limits, (very broad though they are), patient symptoms can not be due to thyroid issues, but must be "somatoform disorders".

http://thyroid.about.com/od/newscontroversies/a/weetman_3.htm

[UK68]

Thank you so much - I will go through it, and get my arguments together.  I just don't understand why she won't give it a try - if it doesn't make me feel better then fair enough, I'll stop!

[gimel]

I really feel for thyroid patients in the UK.  We hear so many times of doctors that only follow the NHS dogma about using TSH as the primary diagnostic, with predictably poor results for the patients.  I thought you might like to read this comment from one of your fellow UK members, who was finally able to get the help she needed.


"What I have learned from my experience is that you have to go to the Dr's office and TELL THEM WHAT YOU WANT and to go backed up with knowledge.  You have to tell them that you have done your reading and looked into your condition and care about the long-term treatment of your health and thyroid.  If you fight for what you want, you will eventually find someone that is happy to go along with your wishes.  But we all have to take charge of our own health, right?"


So in preparation for that, I suggest that you make a copy of the link I previously gave you, and also copies of about 3 articles, all on one site that I am going to send as a link.  This is the very best and most comprehensive site that I yet located in all my searching on the net.  The thing that will make it very helpful for you is that each article lists numerous scientific studies that support the info that is given.  That should take away your doctor's direction not to believe what I read on the internet.  It won't be  just our personal opinions that you will be giving the doctor to try to get adequately tested and treated, but scientific data.  

So go through all the info.  Ask whatever questions you need to, in order to understand better, and get fully prepared to discuss all this with your doctor.  Sending PM with link right now.

[UK68]

Finally got the 24hr ECG done - all normal, so got TSH retested and made appt to see GP.   Unfortunately the doctor I'd previously discussed treatment with has left.  New doc said my TSH had dropped (now 5.4, was 7.5 in July) and as T4 is normal treatment was not justified.  

I've googled the guidelines and found this:

If the serum FT4 concentration is normal but the serum TSH is >10mU/L,
then treatment with thyroxine is recommended (II,B).
• If the serum FT4 concentration is normal and the TSH is elevated but
<10mU/L then thyroxine therapy is not recommended as a routine therapy.
However, thyroxine may be indicated in non-pregnant patients with goitre;
also in patients who are seeking pregnancy (II,B).

http://www.acb.org.uk/docs/TFTguidelinefinal.pdf

No idea how to move forward - she was adamant that treatment was not justified, and told me not to believe what I read on the internet :(

[UK68]

Probably a bit far away, but thanks for the offer!

[gimel]

Be sure to insist on the Free T3 and T4.  You might also ask about testing for Vitamin D.  

I have the names of three doctors in the UK.  One is in Edwinstowe, Mansfield,  another in the London area,  and the third is at the Chelsea/Westminster Hospital.  Sorry but I don't know enough about how England is divided up to determine if these are anywhere near you or not.  

Any interest in these?

[UK68]

Thanks for responding - I'm going back to the GP on Monday, so will ask about the T3 and T4 tests.  I know they tested T4, but don't know if it was free or total, and I don't know about T3.  I also don't know if they tested for antibodies, so will ask that too.

I'm on the Surrey/Hants/Berks border, so if anyone does know of a good doc, please let me know!   Although in the UK, persuading the GP to make a referral can be a job in itself...

[gimel]

I went for years with subclinical hypothyroidism, for which I was refused treatment.  It was hard to drag myself out of bed many times.  I finally got my doctor to try a therapeutic trial of thyroid meds.  Over a period of time I eventually was taking a full daily replacement amount of 200 mcg of Synthroid.  Although I did feel better, I still had lingering hypo symptoms until finding out on this forum about the importance of Free T3 and Free T4.  Note that Free T3 and T4 are not the same as Total T3 and T4.  Many doctors only want to test for TSH and sometimes Total T4.  Many resist testing for T3, on the false assumption that if they know T4, they can be sure that T3 is about the same level.  This is incorrect many times, especially when a patient is taking only T4 meds.

I got my Free T3 and t4 tested and found that FT4 was on the high end of the range, due to taking the Synthroid, but my Free T3 was very low in the range.  Also note that when I say range, I am talking about the so-called "normal" range.  Unfortunately these ranges are far too broad to assure that all results within the ranges are adequate.  I talked my doctor into letting me switch to a T4/T3 combo med, Armour.  Now after some tweaking my FT3 level is about 3..8 (range of 2.3 - 4.2) and my FT4 is .89 (range is .6 - 1.5), and I feel best ever.  Many Forum members have also reported that symptom relief for them required that FT3 was adjusted into the upper part of its range and fT4 adjusted to around the midpoint of its range.

From all that I have learned from the good folks on the Forum, plus a lot of searching for info, I have reached the conclusion that a good thyroid doctor will treat a patient clinically by testing and adjusting FT3 and FT4 as necessary to relieve symptoms, without being constrained by resultant TSH levels.    Symptom relief should be all important, not just test results.  You can get a good idea of such clinical treatment from this link written by a good thyroid doctor for patients that he consults with from a distance.  The letter is written for for the Primary doctor of the patient to help guide treatment.

http://hormonerestoration.com/files/ThyroidPMD.pdf

I know from many UK members that it is difficult to find doctors there that are willing to test for FT3 and FT4 and treat a hypo patient clinically, but it has been done.   This is a quote from a successful UK member who went through a lot before she finally was successful in getting the testing and treatment she needed.  

"What I have learned from my experience is that you have to go to the Dr's office and TELL THEM WHAT YOU WANT and to go backed up with knowledge.  You have to tell them that you have done your reading and looked into your condition and care about the long-term treatment of your health and thyroid.  If you fight for what you want, you will eventually find someone that is happy to go along with your wishes.  But we all have to take charge of our own health, right?"

Members will be very happy to help get you prepared for your doctor, so that you know what you need and have the knowledge to back it up when you insist on getting the right testing and treatment.

Also, if you will tell us where you live in the UK, there is a slim possibility that we could provide the name of a good thyroid doctor in your area.