Spoke to my GP re starting treatment. - Thyroid UK

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Spoke to my GP re starting treatment.

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Well following on from my post 2 days ago with my latest blood results my GP called me. This is the GP that after my March results (TSH 7.54 FT4 15.8 & FT3 5.6) said he wanted 1 more consecutive increase then he would treat before the guidelines of TSH at 10. So after my results on Tuesday I rang and booked a phonecall. He just called me and this is how the conversation went.

He said 'ok so there has been another rise'. I said 'yes, this TSH has been increasing since 2013. T4 has been a little up and down during that time too'. I had to again tell him TSH was 4.9 in 2013 (0.35-5.5 on NHS lab). T4 11 (7-17 on NHS labs). Then last summer TSH was 5.35 and FT 10. Now as TSH has climbed T4 seems to have gone up but in January I used Blue Horizon and their ranges differ to the NHS. These latest results were all done private as I gave up on nhs testing. My TSH in January was 6.54 (0.27-4.2) FT4 14.7 (12-22), March TSH 7.54 FT4 15.8 and this week TSH 9.28 and FT4 15.76.

My Gp after hearing all of that and typing it down despite having copies of all my results said 'I want to test your antibodies'. I said 'Well I asked you to do this last year but you refused, I have since been private for bloods and tested my antibodies twice and both times normal and you do have the copies of these results'. GP 'Well I think we should wait another 2 weeks, re test the TSH and antidbodies on the NHS and see if anything has improved'. To which I replied 'You told me just 1 more test and you would treat me as I am so unwell, you told me to wait 4 weeks back in March and I have waited 10 to see if anything changed and it's shot up to 9.28!. I am ill, I am beyond fatigued, weak, anxious, upset and tearful, dry skin, losing my eyebrows, body temp all over the place, panic attacks occasionally, extreme muscle weakness in my legs and arms and the worst being I can't live my life. I am crashing and ending up in bed if I make the kids tea and do yoga on the same day! I can't even go to more than 1 shops without crashing badly afterwards at home. I am developing agoraphobia because of this. I cannot carry on like this, a dog wouldn't be left struggling like this! I am a mother to 3 children, I have no family support as my husband works long hours. I want my life back so I can be a good mother to my children, I am missing out on so much feeling this ill. I am not just tired!'. To which he said 'Ok, lets start a trial.' lol!!

Now this is the best. He said to me 'you don't have antibodies though, that is strange, that is why I suggested we wait to see if things got better as it's a good sign you don't have antibodies'. Now this is the second GP in this practice to say to me you can't have hypothyroidism if you have negative antibodies. Seriously, what medical school do these people go to????? I am right aren't I that of course you can still develop hypothyroidism without having hashimotos? I told him my mother doesn't have an autoimmune condition yet she has hypothyroidism.

This has been the best GP out of a bad bunch and it was him who said he felt for me being so ill and he said in March even a slight increase next test and he would treat me. Now I have a result 0.8 off the NHS magic 10 he was trying to make out I was just anxious and depressed. Absolute madness. He said 'are you just feeling tired?' No!!! Tired?? I wish i just felt tired.

So I am starting a trial of levo as of tomorrow. I am not sure of the dose but he said trial dose for 8 weeks then a blood test, and he will be doing my antibodies. Grrrrrrrrrrr! Can antibodies change and turn positive? i have had 2 that were very low and completely normal.

Sorry to post again, I am beyond frustrated. I feel awful. I feel my anxiety has gone haywire since having this the last year but the last 6 months since my symptoms got worse my anxiety has been awful. I seem to just be so scared of everything and not thinking straight due to how exhausted i am and brain fog. I felt he was trying to say that how I felt was all just depression because he also said 'well our energy drops depending on our mood that day'. I score 7 on a depression test lol. I am not depressed. I am tired and wired lol! and agoraphobic due to losing all confidence in myself as in shops or public places I feel I will pass out I am that poorly.

Can anyone reassure me about starting levo. I am worried sick as I get really bad anxiety about starting medication incase i have a bad reaction and end up in hospital but I have no choice but to take it if I want to get better so I am feeling rather anxious about this

Thank you for your continued support.

Julie x

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32 Replies

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Zoz19 years ago

Hello, not sure I can help much, just wanted to offer some support and empathy. I'm the opposite way round to you, my thyroid function is in range (though not exactly normal) and my antibodies are through the roof. I also suffer terrible anxiety and was really scared about starting Levo which I eventually did last week - ok so far but early days!

You can be hypo without antibodies and you certainly don't want them so keep hoping they stay negative 😊 As I understand it, docs are reluctant to treat early in the absence of antibodies as it is possible for the thyroid to correct itself (this is much less likely if you have antibodies). That said, your thyroid has shown a progressive decrease and your tsh is far higher than mine so sounds like treating is a good idea. Can you get referred to an endo for a more specialist opinion?

People on here are really knowledgeable and will be able to advise you. Hang in there X

• in reply toZoz19 years ago

Thank you.

He hasn't suggested a referral to an endo unfortunately. He has just suggested starting levo but he did want me to wait longer to see if that figure went down.

I now feel totally confused as to what he said about the antibodies and doubting whether I should start the levo at all I waited longer between the last test and this one hoping it would get better but my TSH has increased even more. I was not expecting to rise as high as 9 already.

I hope things get better for you, this certainly is a horrible situation to be in.

Take care

Julie x

Zoz1• in reply to9 years ago

Don't wait for him to suggest it, request to be referred. If your tsh is that high, it's really worth giving treatment a try: if you don't get on with it you can stop. An endo should be able to advise you on this and do a better job than your GP of explaining what's going on. Don't panic, there are some supportive people on here to point you in the right direction x

• in reply toZoz19 years ago

I'd have a fight on my hands i am sure and right now I can't even get out due to high anxiety and agoraphobia all of this has caused so a big hospital appointment would be too hard for me. Urgh I feel a total head case admitting that.

Thank you x

Zoz1• in reply to9 years ago

Ok, so take one step at a time, try the Levo and see how you get on. If it works and you start to feel better, you might not need the endo anyway.

With regards to the fight, I don't think they can refuse you a referral: you have perfectly reasonable grounds to seek the opinion of a specialist.

I have to admit, I did see a horrible endo initially who really upset me but that's sadly the NHS lottery. I have since seen a private endo and the relief of having someone explain everything and reassure me has been huge. There is a list of good/sympathetic endos available from this forum which you can request from louise.warvill@thyroiduk.org.uk

Stay strong x

• in reply toZoz19 years ago

Thank you so much.

I've picked up my prescription and he's given me.25mg of levothyroxine. Now to find the courage to start it. I'm terrified starting anything new.

Justiina9 years ago

You need to try it! My cousin is in same situation, no antibodies, high-ish TSH ( the her highest was 6 when given levo) and T4 like yours. She is now doing much better and TSH slowly dropping after 10 weeks on levo. She is happy and content.

Besides certain % does not have antibodies and only fine needle aspiration confirms hashimoto.

I would say anybodies does not matter. Your TSH is very high and you are very unwell having all hypo symptoms. Trialing levo is the only right thing to do now.

You might feel worse at some point on levo before you find the right dosage, but don't give up. Post your progress and ask if you feel unsure!

• in reply toJustiina9 years ago

Thank you Justine.

I just felt confused after what he said about the antibodies and wanting me to wait even longer before we treat it. I am now doubting whether I should even start it and doubting myself whether how ill I feel is all in my head

He said he wanted to see if it came down, but since January it's done nothing but increase so I can't see that it will suddenly decide to come down from 9.28. I can't keep waiting either. My husband thinks he just wants me to wait until I hit the magic 10 going back on his word last time we spoke when he said he wanted to treat me after 1 more test.

Thank you. So glad to hear your cousin is doing well.

Julie

Justiina• in reply to9 years ago

I understand you feel confused and unsure, no wonder how bad they have treated you making you believe it's all in your head! Disgusting.

Now you need to rewire your brain and ignore the doctor. I would understand if it was one off high TSH but as yours keep rising steadily with crippling symptoms I feel they just have no clue.

Btw my cousin's mom is hypo too and no antibodies so it just runs in the family end of story

I hope you will feel the benefits of levo soon after you start it so it will ease your anxiety and you can concentrate on healing and possible set backs won't scare you.

I keep my fingers crossed !!!

• in reply toJustiina9 years ago

Thank you.

It has been awful. Since last year I kept telling my GP I was exhausted and crashing after workouts which has now led to crashing after even just basic housework and yoga. It's horrible and as a mother it's tough. I seem to just do little things then rest, do another little thing then rest.... that's my day. I have to sit and rest alot while the children are in school and I worry alot that i am being lazy and should be busy all day around the house like I used to be.

I have been treated terribly by the GPs. One in January told me there was nothing wrong with my results and i was looking for problems that weren't there and told me i just had CFS and to basically go away and deal with it. I have been so anxious and stressed because of all this and have ended up rarely going out due to how ill I feel when i do. Urgh it's been a long 6 months.

Sorry to moan, I know people have far worse to deal with in life. I am alive therefore I am blessed

Thank you

Julie x

Justiina• in reply to9 years ago

Don't apologise. You have right to moan, you have been so unwell and you have a family to take care of.

Some doctors just don't seem to care how bad it can feel when we are told it's in our head.

That's why it is important we have this forum. So many has been there and knows how awful it is. Here we can share experiences and feel we are not alone with it.

It's good you open up about it here and let it out.

This forum is a life saver!

• in reply toJustiina9 years ago

Thank you so much Justine.

I've picked up my prescription. He's prescribed 25mg. Now to find the courage to start it. I am terrified taking new Meds. I had a nasty reaction to an anti depressant many years ago. The scared me for life.

Justiina• in reply to9 years ago

I am the same, very scared of meds, even vitamins lol.

I hope it goes smooth, keep us posted

You can do it girl!

• in reply toJustiina9 years ago

Thank you. It's a horrible fear isn't it 😁

Justiina• in reply to9 years ago

It is! And it makes me feel a bit silly :/ wasn't like this younger and did not react to meds.

• in reply toJustiina9 years ago

You do feel silly. I'm worried about reacting and ending up in hospital. I don't want to be alone when I do it so the weekend is my only time but then I fear doing it as my gp is closed lol. Anxiety certainly gives you a million things to worry about haha!

shaws9 years ago

Post as much as you like. Get rid of the frustration as we've all 'been there - done that' many times.

How is it they are so very uneducated, unknowledgeable about a thyroid hormone dysfunction.

How is it that before levothyroxine and blood tests were introduced we were diagnosed promptly by our clinical symptoms and given a trial of NDT at the very (least). No problems then about us developing other problems, Everything in our body needs thyroid hormones, from top to toe. Nothing works and that's what I don't understand - that they have no knowledge of the damage they can cause to patients, never mind a reduced quality of life.

Your GP seems scared of prescribing and I think they all need a super 'Course on the Dysfunction of the Thyroid Gland and the Patients who are left in Limbo'.

It is such a Pity that all of the Endocrinologists refused to go to a Conference which was being held by a Virologist, a Dr Skinner, who was so worried about the 'parlous situation with the modern method of diagnosing and treating'. Not one had the dignity to accept because Dr S was getting all of the patients who had been disgarded and undiagnosed and it upset him. However, every one of the distinguished Endocrinologists refused to attend his Conference, the last one the day before it was due to start.

So, some doctors do retain that 'instinct' to make patients well when everyone around them are in denial.

• in reply toshaws9 years ago

Thank you.

That's so interesting.

I'm confused now after he said about the antibodies and wanting to test them again in 2 weeks and tsh. He actually wanted to hold off treating again to see if tsh came down despite having nothing but results showing an increase at each test. I said to him it's increased alot since January. I can't carry on feeling like this and feel like they are just telling me I am anxious and low so thsts why I feel ill. It's simply not true.

Can hypothyroidism cause anxiety? My gp seems to think not as it's a hyper symptom.

Thank you for your kind reply.

Julie

shaws• in reply to9 years ago

Julie, your GP is wrong - I'll give you a nice 'little' list which you can tick off all of your symptoms. Yes, hypo can cause anxiety as well as lots of other symptoms.

They seem to be frightened off prescribing and it's only a hormone, for goodness sake, we aren't going to be turned into Cinderella overnight (if only) so I've no idea why they are so reluctant, especially with disabling symptoms.

thyroiduk.org.uk/tuk/about_...

• in reply toshaws9 years ago

Fab. I tick over half. Especially the general and mental ones.

Thank you.

humanbean9 years ago

Don't ask to see an endo. There is evidence galore on this forum about how useless they are.

You've been offered a trial of levo - grab it with both hands NOW!

Don't put up more barriers to treatment!

• in reply tohumanbean9 years ago

I want treating. My gp has just confused me as to whether I need treating. Because I have no antibodies and him wanting to wait 2 more weeks to see if it came down.

shaws• in reply to9 years ago

I didn't have antibodies. Antibodies mean the person has an attack going on and they are attacking your thyroid gland and you will eventually be hypothyroid. The proper name is Autoimmune Thyroid Disease - also called Hashimotos - the commonest dysfunction.

I am hypothyroid - did not have either antibodies or a Thyroid Function Test (for about 7 years) - ailing all the while - given 'other diagnosis' and after a barium swallow was diagnosed as having a 'post cricoid web' and was told I'd choke to death if I didn't have a 'procedure' so went ahead but had no such thing, so all for nothing. It was a first aider who finally suggested to me 'thyroid' and it was TSH 100 by that time.

There is Autoimmune Thyroid Disease

Hypothyroidism

Congenital Hypothyroidism

Hyperthyroidism

plus some other thyroid disorders.

It's a big learning curve but worth it when you are finally well and feel normal health, despite the guidelines.

• in reply toshaws9 years ago

Thank you. It certainly feels like I've alot to learn.

My gp has prescribed 25mg levothyroxine. I'm very frightend to start it. Side effects scare me as doessential being allergic so I find the first time taking anything frightening. I'm a nightmare but it's because I had a very nasty reaction to an anti depressant many years ago.

Thank you for explaining that to me. It made sense.

shaws• in reply to9 years ago

I can understand completely how you feel. When given any new medication and you don't know how you'll react your stomach goes into a knot and your heart beats faster, even before you swallow it.

However, being an important hormone it is necessary for our wellbeing and it has to convert to T3 before you feel the effect and that will take some days, I believe.

There is no need to be nervous as levothyroxine is 'orthomolecular' which means compatible with the human body although it is a synthetic form.

I really don't know how 25mcg of levo will affect you as it is a very small dose. Normally 50mcg is a starting point for six weeks with increments of 25mcg every six weeks till TSH is 1 or lower with symptoms removed. That's the ideal. Of course all other vitamins/minerals should be at an optimum too.

(bearing in mind I'm not medically qualified - just have run on the treadmill like most of us on this forum with hypothyroidism).

• in reply toshaws9 years ago

Thank you. That's really reassured me and I may be brave and start it tomorrow morning. I just get scared of reacting and ending up in hospital but I know I can't stay like this forever.

I just am concerned is the gp sure it's a thyroid issue. I worry as it's only tsh rising. T4 seems to be ok at 15.7. I've no antibodies. I'm worried why it's risen from 6 to 9 since January. It seems to be rising so fast. I just worry about starting thyroxine as my gp couldn't tell me 100% why this is happening so fast.

Your replies are really helpful. Thank you.

Julie

shaws• in reply to9 years ago

The first sign that a thyroid gland is beginning to dysfunction is a rising TSH (Thyroid Stimulating Hormone from the Pituitary Gland which tries to encourage the thyroid gland to produce sufficient T4).

You are fortunate the doctor is prescribing as many don't until the TSH is 10 and by that time the person could feel quite unwell.

• in reply toshaws9 years ago

I am fortunate. Even if it took him a while to realise how ill I've been these last 6 months. I'm very unwell and struggling to take care of my children like this.

My gp said that over time the t4 would have started to drop as tsh kept rising. It just seems to have increased over time not gone down which I found confusing.

Thank you.

humanbean• in reply to9 years ago

I have no antibodies either. And I've been tested a few times (mostly at my own expense).

I consider treating myself to have been the best thing I've ever done to improve my quality of life, my physical health and my mental health.

It isn't compulsory to have antibodies before suffering with an under-performing thyroid.

You might have a small thyroid.

You might have hypothalamus damage.

You might have pituitary damage.

You might have problems with low vitamins and minerals - ones that you've never had tested.

You could have adrenal problems.

You might have problems with low sex hormones.

The list of things which could cause thyroid hormones to be too low is probably quite a long one, if only we knew everything there was to know about it!

• in reply tohumanbean9 years ago

Thank you very much. I guess though whatever the cause with a tsh as high as mine I need treatment? I've picked up the thyroxine today.

humanbean• in reply to9 years ago

Yes, you need treatment. Don't procrastinate any longer. Start the levo either last thing tonight or first thing in the morning.

Good luck!

• in reply tohumanbean9 years ago

I know. Just need to find the courage to pop that first one 😁