Has anyone actually managed to expand the thyroid knowledge of their GP?

[mostlyhappy]

Ok, so after a few months of feeling not so bad, a few weeks ago the overwhelming tiredness, carpal tunnel and tinnitus came crashing back. I'm Hashi's and taking 50/75 levo. GP, who is lovely and very understanding, orders up blood test and full blood count. Turns out B12 cant be done unless indicated by first test. I had a phone appointment for the results, iron is mid range and TSH is 3.37 (up from 2.1 on last test) which she says is perfect, right in the middle of the range which is where we want it. I did tell her that my reading around the subject and the Thyroid UK advice suggests I should be aiming for a TSH of 1, she has never heard of this and won't put up my levo as it increase risk of osteoporosis. I think she wants to refer me for surgery for carpal tunnel which she says is unconnected to thyroid (that is not happening) has offered me an appointment. She works part-time, I can't imagine she would read a reference paper or weblinks if I gave them to her. Where do I start??

[humanbean]

TSH is 3.37 (up from 2.1 on last test) which she says is perfect, right in the middle of the range which is where we want it

Your doctor is wrong.

For a start, what kind of reference range is being used if 3.37 is mid-range? Is she saying that the top of the range is nearly 7? Because I've never seen a top of the range that high. I think she is spouting nonsense.

Your doctor obviously thinks that the distribution of TSH in a healthy population is a normal distribution. In other words she thinks it looks like this :

cnx.org/resources/9152cfd5d...

On a graph of that shape the bottom of the reference range would be close to the left of the graph, the top of the reference range would be on the right of the graph, and all properly treated hypo patients would be clustered in the centre of the graph. Well, she 's wrong.

The distribution of TSH in a healthy population is highly skewed and the bulk of healthy people have a TSH substantially lower than the middle of the reference range :

web.archive.org/web/2004060...

Look at the graph, read the blurb. The bulk of the results lie around 1.25. Your TSH result of 3.37 is nowhere near the biggest bulge of the graph.

The data for the graph was gleaned from this research paper :

eje-online.org/content/143/...

The most important part of that paper from my point of view is the right hand side of Table 3 on page 4. It gives the median TSH for people of each gender and in different age groups. So, for example, the median TSH for women aged 40 - 49 is 1.40, and 95% of women of that age group have a TSH between 0.53 and 3.4.

I think you should print out the graph and give it to your doctor.

[humanbean in reply to humanbean]

Oh, by the way, carpal tunnel problems are common in hypothyroidism. If you got your results optimised then your condition might fix itself.

[mostlyhappy in reply to humanbean]

yes, and I am convinced it is linked to the tinnitus and tiredness, all three hit in waves....I have told her this and yet surgery is supposedly an option

[mostlyhappy in reply to humanbean]

thanks, I am going to study these graphs and print out! x

[Clutter]

Mostlyhappy,

You are undermedicated. If you were optimally dosed on Levothyroxine it is very likely carpal tunnel pain will improve and you may be able to avoid surgery.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.4 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email [e-mail] if you would like a copy of the Pulse article to show your GP.

[mostlyhappy in reply to Clutter]

damn, their website is down! I'll check back later. thanks though x

[Clutter in reply to mostlyhappy]

Mostlyhappy,

Try again in the morning after the office opens.

[mostlyhappy]

Right, I am going to try and be assertive here, I'm pretty pathetic around doctors (unless it is something to do with the kids or my parents of course!). Clutter, I FEEL undermedicated, she is going to be very reluctant to up my levo, I will ask her to bear with me and at least try it, but I have enough in hand that I can do it anyway. I am on 75 four days pw and 50 three days pw, going to 75 daily shouldn't cause great alarm if I confess later on that I have trialled an increase and then ask for an increase in prescription should it??

Meanwhile, thanks Humanbean, I will print off that graph as I'm sure she thinks I am making it up....

[Clutter in reply to mostlyhappy]

Mostlyhappy,

I doubt such a small increase will do much good. You need 100mcg daily.

[shaws Administrator]

Your doctor has been trained to treat hypothyroidism in medical school. No wonder we are in such a state. I have just listened to this Vlog by a female doctor and she admits this.

healthunlocked.com/thyroidu...

You have to educate your doctor slowly that the guidelines for diagnosing hypothyroidism are out of date. The 'range' given is for people who have no clinical symptoms and might feel fine on a TSH of 4 or 5 so wouldn't be at the GP complaining.

Once diagnosed and given thyroid hormone replacement, the aim is a 'normal' of around 1 or lower, and some need it suppressed to feel well.

If you are on levothyroxine and have a TSH of nearly 4, you will have unpleasant symptoms. Osteoporosis and heart problems are caused by too low a dose of thyroid hormones. T3 in particular keeps our heart and brain in good working order. Usually many speak of brain fog etc.

thyroiduk.org.uk/tuk/testin...

TUK site is down at present for maintenance so I cannot give another link..

[Nanaedake]

Tinnitus can be a symptom of B12 deficiency, check the Pernicious Anaemia UK website for more information. What was the reason that the lab won't check for vitamin B12 deficiency.

[BeansMummy]

My named GP admitted that she didn’t know much about Hashimoto’s, so she was clearly floundering from the start. Like yours, she also thought that your TSH just needed to be somewhere in the range, and even ignored my endo’s letter which stated it would ideally be below 2. She advised eating Marmite to sort out my B12 deficiency; and offered anti-depressants for horrendous neurological symptoms which she wasn’t concerned about (it turned out to be a neurological disease). She happily ignored my concerns that I was addicted to high-dose co-codamol (following spinal surgery) and said that it would “gradually sort itself out” (it didn’t, of course). She wouldn’t test my vitamin D even though I had deficiency symptoms - when tested by another GP, it was seriously deficient.

I was banging my head against a brick wall, and also not mentally in a good enough state to even try discussing anything with her. My husband had to come to appointments with me. I know she labelled me a depressed, menopausal, hysterical hypochondriac. When I later got a copy of my medical records, she’d written that I “relished all the attention”.

I eventually found a different GP in the practice who was more open to sensible discussions. Perhaps there is someone else in yours who is more approachable.

If you are capable of trying to educate your GP, go for it. I was just too broken. Mine wasn’t open to any of it. I refused to see her ever again, but often wonder if I should have made the effort to do so once I’d regained my health to show her what decent care could do, but I don’t think she would have cared one iota. She was one of those “I am a GP, therefore I am a god” brigade.

Sorry, went off on a ramble then …

[mostlyhappy]

UPDATE: Just wanted to say thank you to people taking the time to respond...it really did encourage me.

Armed with the graph printed off, off I went to see my GP today. It was so much easier face to face rather than over the phone, we talked about why I didn't think 3.37 was 'bang in the middle' (I had taken levo that morning as the blood test was sprung on me) as it put me on about the 98th centile, she was actually really interested in the graph, asked to keep it. The fact that it was a sample of 65000 people helped. She had no idea that tinnitus or carpel tunnel was common amongst UAT, or stomach issues, total news to her. She checked my ears expecting to see something obvious, clean as a whistle, tested my grip and clearly one hand is currently much weaker etc so she said she would look up the thyroid uk website later. Meanwhile she has agreed to increasing prescription to 75 at the moment and retesting in 6 weeks (on the promise that I would let her know if I feel jittery, yeh, I'm 50 not 5) to see if a further increase would be beneficial. I like the GP though so I'm glad she listened, I feel I made a little bit of progress with it all today