GP wants to take me off thyroid medication!

[ShonaGreen]

Hi, I'm feeling rather low after appointment within GP today. I wanted to speak with them about results from recent test showing low cortisol and DHEA levels (results in recent post) and also whether I should consider increasing current dose of Levothyroxine from 50mg to 75mg as starting to feel unwell again.

My recent results from 17 June after 2 months on 50mg Levothyroxine are below. The GP today said they were all fine as well within normal ranges:

TSH - 0.577 (range 0.27 - 4.2)

Free T3 - 4.44 (range 3.1 - 6.8)

Free T4 - 15.1 (range 12 - 22)

Ferritin - 162 (range 13 - 150)

Folate Serum - 6.12 (range >3.89)

Vitamin B12 Active - 93.4 (range 37.5 - 188)

Thyroglobulin Antibodies - 236 (range <115)

Thyroid Peroxidase Antibodies - 21.1 (range <34)

At my last appointment I saw a new GP who said she knew little about thyroid problems but as I was responding well to Levothyroxine then happy for me to continue and even gave me a prescription exemption form to complete. She also contacted a endocrinologist to ask for their suggestions on how I should be treated. They responded saying that I don't have a thyroid problem as my levels are all within normal range, and reason I'm feeling better with Levothyroxine is probably just a placebo effect so he suggests taking me off it immediately as probably doing more harm than good! Also not concerned with testing positive for Thyroglobin Antibodies, as this is only significant if treating thyroid cancer and if I had true thyroiditis then I'd be overactive as it takes high thyroid levels to cause inflammation.

I stood my ground and mentioned the research I had done, that to feel well you needed to be within optimal ranges, that Free T3 is significant and should be considered, but he thinks that it's only TSH levels that indicate whether you have a thyroid problem or not. When I asked about the low cortisol test results he then said that he didn't know enough to give me advise and offered to refer me to another endocrinologist. I asked him not to take me off Levothyroxine, especially considering the last GP I saw was happy enough to give me a prescription exemption form!

I know this is good news but I'm seriously starting to doubt myself and wondering if I'm just making myself feel unwell. Also not sure what to do if/when they do take me off Levothyroxine? I'm hoping I can get a private appointment with an endocrinologist soon, but there's only a few in my area and they seem to specialise in Diabetes.

[ILR2019]

Forgive me, but I was under the impression thyroid disorders are controllable not curable so meds are for life? Why did they disregard your normalising levels were a result of taking meds.

[ShonaGreen in reply to ILR2019]

Thanks for your message ILR2019. I asked the GP that very question, that wasn’t it a good sign if my levels were increasing after taking Levo for 2 months, but his response was that you would expect most people to respond in the same way and that it can be harmful to take Levo if it’s not medically required!

[JumpJiving in reply to ILR2019]

Not all thyroid conditions are for life. There are forms of thyroiditis, such as postpartum thyroiditis, that can resolve themselves (see nhs.uk/conditions/thyroiditis ). Not saying that this is the case for ShonaGreen , just saying that it can happen.

[NWA6]

Oh god ShonaGreen 😢 I’m so sorry to hear your story. I just can’t bear to hear the same uneducated, uncompassionate, irresponsible SH** over and over again. I could weep!

I’m sorry I have no advise but the more experienced members will hopefully guide you. Friggen Endocrinologist should be stripped of their licenses but only after they’ve had their thyroids removed and sentenced to life of undermedication.

Thank goodness you stood your ground! Keep going! You are not mad, you are right!

[ShonaGreen in reply to NWA6]

I really appreciate your message Paula6, it certainly helps to know that others understand and have probably been in a similar situation. I'm keeping everything crossed that I can see an empathetic endocrinologist. I guess the worse case scenario is that they stop my medication but I can see from here that others are having to self-medicate so will seek some advice if (and hopefully not when!) this happens. Onwards and upwards as they say!

[NWA6 in reply to ShonaGreen]

The narrative might differ slightly but the story is the same the world over, egotistical unsympathetic medical ‘professionals’ with a lack of knowledge ruining lives up and down the country 😣 They annoy the heck out of me!

[silverfox7]

The man hasn't a clue! Your readings are better as you have been taking your medication! Try not to cross his path again!

[Treepie]

I have not read all your posts but I see after one set of results Seaside Susie suggested that the problem may be your pituitary not your thyroid .Gas this been explored?

[ShonaGreen in reply to Treepie]

Hi Treepie, I’ve mentioned this a few times to different GP’s and they’ve said that it’s unlikely to be the case based on results or they don’t know much about it. I found one GP that seemed a bit more knowledgable and he was the one that prescribed me with Levo, but haven’t been able to see him since as they keep changing the GP after I’ve made the appointment! I’m hoping to see an endocrinologist at RD&E soon so will discuss it with them too.

[JumpJiving]

Do you have blood test results from before starting thyroxine?

[ShonaGreen in reply to JumpJiving]

Hi JumpJiving, my initial results on 29/3/19 were:

TSH - 1.92 (range 0.35 - 4.50)

Free T4 - 11.8 (range 11.0 - 26.0)

Free T3 - 2.8 (range 3.9 - 6.8)

[JumpJiving in reply to ShonaGreen]

I am not going to claim to be an expert. I try to work out what I think is going on and then compare with what other more experienced people say.

So, take this with a pinch of salt unless the admins and others agree, but my thinking is:

You need to increase your B12 levels

I can well believe that your pituitary might not be 100%

From your FT3 and FT4 levels, you appear under-medicated. You do appear to be converting, so an increase in levothyroxine might be adequate. If that doesn’t get your FT3 to near the top of the range, or if you still feel hypo, then it might be worth investigating T3 or NDT.

[ShonaGreen in reply to JumpJiving]

Hi JumpJiving, I’ve been taking the BetterYou Vit B12 spray for about 6 weeks and just started Igennus Super B-Complex too . I asked the GP about the Vit B12 injections but they said that my levels weren’t low enough to need them. Will also increase Levo dose to 75mg every second day as suggested by someone else on this forum. Everyone’s help is much appreciated and hopefully on the right track now!

[Angel_of_the_North in reply to ShonaGreen]

Looks like central hypo (problem with pituitary or hypothalamus from those results). TSH should be disregarded, if so. You need a decent endo with a clue as GPs won't know how to deal with it

[ShonaGreen in reply to Angel_of_the_North]

Thanks Angel_of_the_North, I'll definitely ask the Endocrinologist about the possibility of central hypothyroidism. Could my results from recent saliva test showing low cortisol and DHEA also be something to do with pituitary or hypothalamus problem?

Cortisol AM - 6.5 (optimal range 14.0 -25.0)

Cortisol Noon - 1.4 (optimal range 5.0 - 10.0)

Cortisol Evening - 1.1 (optimal range 2.0 - 5.0)

Cortisol Night - 0.44 (optimal range 1.0 - 4.0)

DHEA - 83 (range 106 - 300)

When I showed these to my GP I asked about the possibility of central hypothyroidism. It was at this point he agreed to refer me to a private endocrinologist as he said he didn't know anything about these issues.

[Angel_of_the_North in reply to ShonaGreen]

Yes, pituitary problems can cause low hormones in general (cortisol, DHEA, oestrogen, progesterone, aldosterone, testosterone, etc not just TSH), but you don't necessarily get deficiencies in them all

[magsyh]

You are in the same boat as me. My results are much like yours and it's my pituitary that's screwed up. As soon as I took low dose levo my TSH went low very quick and because of that I was very unwell as T4 was too low. So I was told get off the levo you don't need it. I argued with them and NHS will not accept I have a thyroid problem. I went private, got a diagnosis but private costs far too much. I buy my own now, cheaply. And what has happened on 4 months of 50mcg my TSH has dropped back to 2.5 this is normal for me no matter how bad my T4 or T3 was my TSH just sat at 2.5 so I am ready now to try another small increase as I know my TSH will drop like a stone and GP shouts that I'm hyper they won't look into central hypothyroidism. My niece is worse than me she has T4 of 13 and TSH of 0.7 and she is in a bad way but they tell her she is fine. She's far from fine her anxiety and adrenaline issues are terrible because her adrenals are trying to compensate but her TSH is not responding. This is Scotland GPS daft as a brush as we say here! You need to push them and if they won't budge buy your own and prove them wrong.

[ShonaGreen in reply to magsyh]

Hi magsyh, it’s such a shame that so many folks with a thyroid problem are not taken seriously, causes a lot of unnecessary stress! Like yourself, I’m going to see a private endocrinologist and might increase my dose slightly in the meantime to see if it makes a difference, feeling very tired, shaky, dizzy and generally rubbish at the moment. Hope you and your niece get well again soon!

[magsyh in reply to ShonaGreen]

By what you describe it's how I was and the GP said I was hyper with a TSH of o.4 and T4 of 15! It has taken time for my TSH to bounce back on the same dose. They have no idea and expect everyone to react the same but we don't. I hope you stick to your guns and prove them wrong. I bought my own levothyroxine because I was sick of being ill and sick of arguing with them

[Angel_of_the_North]

Your thyroid results are lower in range than most people need to feel well and they are only as high as they are BECAUSE you are taking thyroxine. If you stop taking it, your TSH will rise and your thyroid hormones will drop and you'll be ill again. Stupid GP! If anything, you could use an increase to 75mcg (unless you feel completely well). See another GP with more of a clue