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Family doctor fighting Oncologist, with me in the middle!

Posts: 30
Joined: Apr 2012

As some of you will know, I had my thyroid removed in 2011/2012 (long story), and RAI on 2012. Since then, I have been in the middle of a continuing fight regarding my prescribed dose of Levothyroxine. Every Spring my doctor gives me a health check, including blood tests, and tells me I am on too high a dose of Levo (175 micrograms), and reduces it to 125.I then go to oncology in May, and they take bloods, and tell me the dose is too low, and raise it to 175! I have to get my prescriptions from the doctor (UK NHS rules), so he now controls my dosage. From the comments read on here, and knowing how I feel, I know that I need the higher dose, but cannot get it. It is bad enough getting thyroid cancer, and having the thyroid removed, without all this hassle.

alapah's picture
Posts: 287
Joined: Oct 2009

So is the doctor you mention a primary care physician or an endocrinologist? Maybe that matters little - just curious. Did you have papillary thyroid cancer? What has your TSH level been on those dosages? Recommended TSH levels for thyroid cancer patients are different from standard TSH parameters.

Here is a link to the American Thyroid Association guidelines (http://thyca.org/download/document/409/DTCguidelines.pdf). Recommendation 40 on page 19 states "initial TSH suppression to below 0.1mU/L is recommended for high-risk and intermediate-risk thyroid cancer patients, while maintenance of the TSH at or slightly below the lower limit of normal (0.1-0.5mU/L) is appropriate for low risk patients. Similar recommendations apply to low-risk patients who have not undergone remnant ablation, i.e., serum TSH 0.1-0.5mU/L." If you're high risk, which I am, then TSH is kept well below that. Mine, for example, is around 0.01.

I found this link to a draft British Thyroid Association document which pretty much parallels the American version: http://www.british-thyroid-association.org/Guidelines/Docs/BTA_DTC_guidlines.pdf  (see under section 21.5)

Not sure any of this will be helpful to you. I can't imagine being your situation - it's ludicrous.

Posts: 30
Joined: Apr 2012

Hi Alapah, and sorry for slow response - been away for a while. The doctor who controls my prescription is my family doctor. The UK system is that a hospital doctor will only prescribe the initial medication (after operation or other hospital stay), and then the family doctor then takes over responsibility. I imagine (though nobody will openly state this) that the reason for reducing my dose is due to cost savings. The National Health Service budget, that is allocated to the family doctor, is subject to cuts, due to the current financial situation, and savings have to be made. If all the patients on thyroxin have their prescription cut, and probably patients on other medication as well, there is a huge saving for the doctor's budget allocation. I have now been on the lower dose for 6 weeks, and will have a blood test on 10 November, so will see what that shows up. Currently feel generally poor, with headaches and lethargy.

With regards to the cancer, I had papillary thyroid cancer, with the cancer severity of 4, on a scale of 1 to 5, where 5 is worst case. The tumour was large, and was actually 2mm from my right lung, and in danger of full contact. Following tumour removal and testing, I had the rest of the thyroid and lymph nodes removed. Despite iodine free dieting, I could not get my levels down, and could not have RAI. Eventually a scan revealed part of the thyroid lurking behind the carotid artery (the tumour side) and that was removed bu a different hospital and different surgeon. After that everything worked OK and I had the RAI. The whole process took about a year altogether.

Posts: 28
Joined: Sep 2014

What a horrible experience with the hidden thyroid bit!  I am glad they found it and got it.  Alapah is right about the TSH levels, my endocrinologist is still working on getting mine to the right level.  I don't know much about the UK health care system, sorry.  Some research shows that if the GP is not a partner, a complaint might actually work if he/she refuses to listen to you.  Good luck!


Posts: 30
Joined: Apr 2012

Thanks TechMama. In the Uk, if you have been in hospital, they throw you back to the GP for continuing treatment/medication. I only see the hospital oncologist once a year, and they do testing to see that all is well on the cancer side, and that the wounds have healed OK. They do monitor the doseage as well. The GP does an annual test of bloods, for varous health matters, not just those connected with cancer, and the results indicate any other treatment needed. As an example, a GP who diagnoses Dementia, is given £55 "bonus" by the government (see how many more people are diagnosed now - we will have an epidemic of Dimentia!). As they are also responsible for their own budgets, and 175 microgrammes of Levo costs more than 125, reducing my dose will save them money. Being over 60, I get all my prescriptions free, but that actually costs the GP more.

One other thing, I do not see any test results, so do not know what my levels are. The only info I have ever had is in a letter from the hospital, which did give me my levels on leaving. If I had to pay for the tests, I would be entitled to the results, but as I do not, I cannot see them. The GP would only say they are for doctors to understand, not for mere patients - ha ha!

Still, only a couple of weeks to wait for the blood test (plus a week for results) and we shall see.

Posts: 5
Joined: Nov 2016

Ask your family doctor what he knows about TSH Suppression.

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