I had my GP appointment today as things were just really getting me down. Here's what was said:
It wasn't my usual doctor unfortunately who I came to see about my new symptoms, which was a shame but expected as my usual GP is very popular and is on call sometimes but I went into great detail about each symptom I had.
- Bright red blood flow versus the normally dark brown and black flow during my period that started yesterday – he said that it’s probably due to the iron count being higher as the last test put it at 22 from 15. (30-400.) He has noted it’s an improvement, however small, but has not said when it will be monitored again.
- He has received the report from my Endo in regards to the appointment I had with her last week. My medical record now reads that I have “autoimmune hypothyroidism” and not Hashimoto’s despite the Endo saying I have Hashimoto’s. I noticed this from briefly looking at the screen at the appointment.
- He is also of the same mind as my Endo with regards to the adrenal diagnosis (i.e. weight loss despite eating normally and sometimes more, as well as low blood pressure and the brown patches on my back) and would like to see the ACTH results as well as my Endo receiving a copy of them.
- I asked him about this random stress urine test the Endo had done on me at my appointment and that the Endo told me that she would cancel the ACTH test if the urine test was normal. The GP explained that the Endo put in the report that I had low potassium in the sample and wants to follow up the investigation with the ACTH test. He did not give me a result of this reading but I’m sure it’s written down somewhere in this report.
- I explained to him of the headaches, migraines, hallucinations and nausea and he thinks I could be experiencing a hyper phase. He then said that because the TSH had sharply dropped from 4.6 to 2.7 (0.27-4.2) – pretty much nosedived – within a matter of weeks it was highly likely to be the thyroid sputtering back to life. He went through my last blood test results with me and said that the thyroid function test in November 2013 showed the TSH at 4.3 (0.27-4.2) – still high – and the FT4 at 15.3 (12-22) – still a bit low. He compared that to the following function test which sees the TSH at 4.6 and the FT4 rising at the same rate to 15.6. In his words, he believes the thyroid is still managing to work by itself but I don’t quite know what he’s getting at. I presume that means if the thyroid is continuing to work despite the TSH rising he’ll take me off the medication as it appears to be compensating and reacting to the TSH.
- He asked me if I’ve been getting any more Raynaud’s attacks as the weather isn’t as cold and I said that funnily enough I haven’t. I went on to tell him that there was one day where it was meant to be wet and cold and all I was wearing on my feet were a pair of flat dolly shoes – no socks and no stockings – and I wasn’t even shivering. My toes also went red and hot instead of white and cold. He believes the Raynaud’s attacks are occurring at the same time as the hypo attacks and since the TSH has dropped they aren’t as frequent or it takes them longer to come about than the ones I experienced before.
- I also told him of the dizziness/clumsiness/slipping/tripping over/lurching I get, which mostly happens when I’m out and about and he has put this down to low thyroid levels – BUT – he will not increase my medication as the TSH is “within normal range”. He wants to give the thyroxine more time to work and will not test my thyroid again for another couple of months. I can’t remember the exact protocol for a repeat blood test after a normal one has come back, but it seems like a long time to wait personally.
- He examined my neck since I was worried about a possible nodule and he said he couldn’t feel anything. So since my Endo's secretary has not replied to my email I will post a letter to my Endo about moving my next appointment to an earlier date and asking them to get an ultrasound or fine aspiration in.
Looks like a very mixed sort of appointment, some positive, some not so positive, but all in all, I would be quite happy because they seem to be listening to you, at least some of the time.
If you can see the Endo sooner re the possible nodule, that would be great.
I do wish they would stop talking about the TSH so much because, of course, the TSH tells you ONLY how the pituitary is responding and not how your body is responding to the Levo. If your Reynaud's symptoms have improved it would be because the thyroid levels have improved, not because the TSH has dropped.
To say that a TSH of 2.7 could be a 'hyper phase' is a bit strange, unless he is just assuming a 'hyper phase' without reference to the TSH but only the symptoms - which would be a severe case of double standards, since they ignore hypo symptoms and go only by the TSH!
All those things could equally be hypothyroidism. It is well-documented that many hypothyroid patients experience hallucinations and panic attacks. Headaches and nausea also are not uncommon in hypothyroidism.
As you say, a real mixed bag. If they try to stop your meds on the basis of the TSH, ask them to check the T3 FIRST because unless the T3 is over the top, you are not over-medicated.
I've put a letter together for the Endo to see and hopefully she will act on this letter. It reads:
"Dear Dr ?
I attended an appointment to see you at the Endocrinology and Diabetes Unit at Frenchay on the 13th of January 2014 at 15:30.
Recently some newer symptoms have developed and I am concerned about a possible goitre or nodule at the front of my neck.
The area itself feels diffusely lumpy and I was wondering if an ultrasound scan on my thyroid would be appropriate.
I had an ultrasound scan done at the Bristol Dental Hospital in February 2012 and the sonographer who conducted this scan noted in her words a “bulkiness” on the screen, however this report seems to have been mislaid as my previous practice that had ordered it makes no mention of it.
If this report has indeed been located or there is nothing to assume I have any morphological changes with my thyroid, I would like it looked into as it would help put my mind at rest.
Thank you in advance.
Yours Sincerely"
Hopefully this will do the trick.
Well, the GP practice's lab range for TSH is 0.27-4.2 but the low TSH is only 1 half of the story. They wouldn't know the full story without the FT4 or FT3 but because they're NHS registered they will not test the 2 thyroid hormones if the TSH is normal. So that means more money I have to fork out for their lack of thoroughness.
T3 was tested in December and within range. So would that mean I'm over-medicated given that the TSH (sorry for mentioning it again) was 4.6 that time?
Jo! that is exactly like I were, I had antibodies attacking my thyroid that was completely ignored by my first set of doctors, my test results were all over the place. My endo explained that you have receptors that take up the thyroid signals and depending on which one picks up the signal you can go hypo or hyper, which is unusual but not unknown. They struggled to control my thyroid because I could be hypo one minute then go hyper and it is so difficult to control with medication, maybe you are the same it does appear to be so? hope you manage to get it sorted as it is not very nice. Before they found out, I was taking my Hypo meds whilst I had gone hyper & was in a real state as you can imagine, I ended up having a thyroid storm, when I was referred to my endo and you know the rest xx maybe worth asking if you could be the same xx
Yes, I do believe the same is happening with me, as I forgot to take my Levo one day and I decided to make up for it by taking 25mcg extra with my usual dose. Well, before long I had really bad headaches and nausea. I thought my head was going to explode. I don't think it was from the extra 25mcg as I was on a dose of 125mcg at the time, but I think it was a hyper phase as my thyroid area felt very uncomfortable and itchy.
hope you get sorted soon. You seem to have a complicated scenario. I feel lucky that I have the anti bodies but I am most definitely hypo thyroid.
My tsh and T4 are in range but I had a private blood test done by Blue Horizon. It was a home test kit - very straightforward to do.
I had the advanced profile so had free T3 measured.
It showed my tsh and t4 well in range but free T3 in bottom of range. I saw my GP yesterday and had my levo increased from 50mcg to 75mcg.
I'm hoping that the joint pains I have will be alleviated.
As an aside - you should not try to make up for missed meds. Just take a dose the next day or time it's due.
I have put a daily reminder into my mobile so I don't forget. Sometimes I'm even organised to have a small bottle of water by my bed too!
I agree the additional 25 wouldn't have sent you hyper.
I was at occupational health yesterday at my employers and the doctor there explained that medicine is an art more than science and not that precise. It was quite refreshing and helped me with my frustrations.
I had not appreciated that getting the thyroid settled back down and all other symptoms resolved can take anything up to 2 years.
Keep using the site and arming yourself with info. to take control of your treatment. I think it's a great resource.
I see my GP again on Monday to extend my sick note but I don't know if she'll up my meds. They won't willingly test for T3 even though I told them I paid for it last time and then they were up in arms about it. Unfortunately they didn't back this up by looking for it when I had the thyroid function test ordered.
This has been posted many times but the Anthony Toft, BMA Family Doctor booklet on thyroid problems recommends a TSH less than 1 and T4 at the top of the range or higher.
my TSH has only been anywhere near 1 once out of 7 times and that was when the Anti-TPO were at their highest. FT4 has never been anywhere near the top of the range or higher. Highest it's been is 16.8 (12-22)
Sounds like it went reasonably well. I wouldn't expect a GP to override an endo's treatment or to change meds while investigations are underway. They might contact an endo to discuss (if they can be bothered) but wouldn't want to tread on any toes.
I see my GP again Monday to get my sick note extended. People I've spoken to don't think 2 weeks is long enough to be signed off for.
Thanks
Jo xxx
Hi reallyfedup
I see the GP again Monday as my sick note runs out on the Tuesday. I was only signed off for 2 weeks which I don't feel was a long enough time to be off for.
I have no idea how to ask the GP to up my thyroxine as they have said they will only up it if the thyroid function test was abnormal.
Thanks
Jo xxx
Hi Reallyfedup, thanks for your reply.
If my last thyroid function test was done at the start of January and came back normal, how long should I be waiting for it to be retested? And do I get them to understand that the FT4 must be near 20 and my TSH below 1 through Dr Toft's article?
I used to take the Toft book with me to show them and say that I still had all the symptoms so could we at least try it to see if I felt better and that a low TSH is obviously ok.
I found the book by chance in a shop today whilst out and about and have bought it. I may have asked Louise for it some time ago but I've since lost this email after clearing my inbox so i don't want to ask her for the same thing again.
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