Just Had 1st Endo Visit - Any Advice/Help Really Appreciated

[f1ying_swallow]

Hi all,

I've been more of a lurker/reader on here until now and have picked up some great advice over the months so hoping maybe someone could help me as to where to go after a pretty bad Endo appointment that I've just had. Sorry as it's probably a bit long and rambling as I feel stuck as to what to do next.

As a bit of background, I was diagnosed hypothyroid back in February of this year with initial results of:

TSH: + >200.00 (0.35 - 5.00)

Free T4: - <5.0 (9.0 - 21.0)

TPO: + > 2000.0 (<6.0)

After around 7 months and a Levo dose increased up to 150mcg, my GP said that my results were where they should be and, since then the TSH has been generally between 0.03 and 0.09 with Free T4 around 20.9.

Before being diagnosed, I was extremely tired despite sleeping loads and, weirdly, kept forgetting things right when I was in the middle of doing them. For example, I would turn a tap on in the kitchen, go through to the living room to get the dirty dishes, but sit down and start reading a book then only remember the running tap around 20 minutes later or when I walked back into the kitchen. Even during the 2 second walk from one room to another, I completely forgot what I was doing. Also, my reactions/understanding of situations feel totally wrong. I can walk up to cross a road where cars are coming towards me and it's as though my brain can't process this and I feel like could easily walk out into the road in front of them. I tried to describe it to a friend as being like times when you have something weighing on your mind and you suddenly realise that, due to thinking about it, you've not taken in anything around you for the past 10 minutes and have done everything on autopilot. This is what I am like all the time though, even when concentrating!

On Levo, the extreme tiredness has got slightly better, but I still need around 10 hours sleep to feel normal so it's not brilliant. The memory thing has really not improved though, which is why my GP referred me to the Endo. I had my appointment yesterday at the hospital and I tried to explain how I felt. The Endo didn't seem to take it in and started asking if I felt cold or constipated (no). He then wanted to do my blood pressure and kept asking if I felt dizzy when standing up (occasionally). He discussed adrenal problems but said that he didn't think I'd have that, though I've to go back to do a Cortisol test to rule it out. I kept trying to steer him back to the memory/mental function issue and he told me that having an underactive thyroid may have damaged some of my brain cells so it might just be how I am now! As a last ditch attempt, I questioned him about T3. He answered that "T3 has nothing to do with an underactive thyroid and that the body only needs T4 which you get from your medicine and your TSH shows this is fine." He said that there is only a T3 test option shown on labs so that it can be used to prove somebody is hyperthyroid but it's a test never used otherwise. Then that was it, end of appointment. I've to go back in May 2014 for one more appointment where he said he may refer me to neurology for a scan for those "damaged brain cells" but basically the outcome was "You look fine" and that Levothyroxine was suitable as the TSH was okay.

I'm at a bit of a loss as to what to do now. My GP is very good and had talked to me about other treatments such as T3, saying she has so many patients say they don't feel right on T4 only that they can't all be wrong. I think she has to go with the Endo's recommendation though. She tested my B12 which was said to be okay (don't know the result, sorry) and ferritin which was very low at 16 but I've been on 2x Ferrous Fumarate 210mcg for the past 4 months so it is back in range and going upwards all the time. The memory loss thing is really beginning to affect my confidence in myself as I forget things constantly in work and, if in a situation when I'm learning something new, I feel really jittery and wound up. Stressful situations with lots going on requiring multitasking make me feel like my brain is going into meltdown and I jump from one thing to the other without finishing anything whilst feeling panicky about it.

I wouldn't mind trying to get a private consultation but don't really know if there's anything where I am in Glasgow or how I would go about it. Somebody told me I could also for a second opinion but it would be at the same hospital and it's only a small department, plus the Endo I saw said that all cases there were discussed between all colleagues at the end of each day for them to agree on. Since my GP has been very good, I also don't want to rock the boat too much or cause problems.

If you've made it this far, thanks for reading and any advice would be greatly appreciated as I feel really quite lost now on what I could do next.

Thanks.

[Hidden]

I'm sorry - my lengthy reply disappeared into the ether! but welcome to the site!

(I blame the technical difficulties tonight, meanwhile trying desperately to remember what I said!)

Your GP sounds good - but a lot report Endo experiences aren't good. You could email Louise for a list of helpful docs in your area - [e-mail]

and have you seen the Scottish petition?

scottish.parliament.uk/Gett...

Memory issues B12 and gut issues are very important as are irons, ferritin, folate and VitD for starters. We suggest you post all results if you can get them. (see you have posted Thyroid ones) I'm looking at adrenals next too - but not got my head around these yet. Apologies again for losing my reply - have a good look around the support site here for help, and TUK site link below J

thyroiduk.org.uk/tuk/index....

[f1ying_swallow in reply to Hidden]

Hi Spareribs/Clutter,

Thanks for the welcome and the replies. I've got my return visit to the hospital next week for the cortisol test and hoping to see my GP after that so I'll try to get all of my other results to post on here.

I can certainly identify with the dismissive Endo thing! Think the one I saw specialised in hypertension. He actually seemed surprised that my GP had been what he called 'thorough' in testing B12, ferritin & iron and was totally adamant that the body needed T4 only so there was no issue. My GP did tell me prior to my appointment that she has patients on T3 but that I would probably find it difficult to get it recommended by that Endocrinology department as they don't like prescribing it. I don't think it would be worth asking for a second opinion as I guess it would be from another consultant in the same department but I'll definitely email Louise for the list of doctors up here. Hopefully the Scottish petition will help change things in time too if they can get it through. I guess there will be those who will try their best to prevent it.

Thanks again & hope you have a good weekend.

[Clutter]

Most people don't get enough sleep and hypothyroid patients need more sleep than most. 10 hours isn't excessive for hypothyroid px and some need morning &/or afternoon naps too.

Most endos specialise in diabetes not thyroid and tend to be somewhat arrogant and dismissive of the many (300+) symptoms which have been experienced by thy sufferers. My endos do routinely test FT3 but I'm as mad as a box of frogs

that one of them was content for my FT3 to languish below range. I'll probably fire them if happens at my next consult.

Your GP sounds good but probably isn't willing to go out on a limb in prescribing T3, flouting the prejudicial guidelines issued by the RCP and Soc of Endocrinologists that T4 monotherapy is the recommended treatment for primary hypothyroidism.

[humanbean]

Hypothyroidism is considered to be one of the diseases which causes "reversible dementia". (Google "reversible causes of dementia".) In other words, get treated properly and your memory and brain function should get a lot better. I have suffered terribly from memory problems, lack of concentration and thinking difficulties over the last few years in ways very like you describe. I've also had major problems with losing words. I've only started (slowly) getting better since I started being treated for severe anaemia in the summer, and I have also started self-medicating with T3-only last month. It turns out I am one of those people who does well on very high doses of T3. (I felt dreadful on Levo.)

Thyroid problems change the physical structure of the brain, so it isn't surprising that we have so many problems with headaches, thinking, concentration and memory. Take a look at this paper :

ajnr.org/content/23/9/1539....

You need to work on a lot of things in order to recover your health. Some things the NHS might do for you, others you will have to pay for yourself.

1) Get your cortisol and DHEA (produced by the adrenal glands) checked out with a saliva test - sadly you have to pay for this. I know Genova Diagnostics does this, but there are probably others. Once you have the results post them here. Your levels may be fine (unlikely), up and down throughout the day, always high or always low.

2) Ask/beg your doctor to do blood tests for Vitamin D, iron/ferritin (a full iron panel is best if you can get it), zinc, folate, magnesium, Vitamin B12, copper. Your GP may do some of them. It is very unlikely she will do all of them. In the mean time buy the best quality multimineral and multivitamin you can afford and start taking them every day. Lamberts and Solgar are good brands, but other people can probably recommend some other options. (Make sure you take supplements, particularly iron, well away from taking your thyroid medication.) Once you have your blood test results post them here and people can recommend particular supplements you might benefit from. For more info, read this : stopthethyroidmadness.com/r...

3) Read this : stopthethyroidmadness.com/t...

And this (it's old but there may be something of interest) : thyroid.about.com/cs/public...

4) Ask your doctor for a Free T3 test.

Good luck!

[f1ying_swallow in reply to humanbean]

Hi Humanbean,

Thanks for your reply and advice. I could take a copy of the paper in to show my GP. I can really empathise with forgetting words etc. It's so frustrating and quite a difficult symptom to describe. Sometimes it feels like the brain is wrapped up in something like thick plastic and can't free itself to think properly. When I think back to around 7 years ago, I felt so sharp mentally and enjoyed being challenged. Now, new situations make me feel anxious as I don't take things in so quickly.

Did you find that the treatment for anaemia was really what made the difference for you (along with the T3)? My ferritin was tested and was low at 16 so I've been taking 420mcg of Ferrous Fumarate for the past 4 months. I had read that iron - or lack of - can cause a major difference in how you react to thyroid treatment. Severe anaemia sounds awful - I'm glad you've managed to get at least on the road to recovery, though it sounds like a long process.

Thanks again for your help and advice. Hoping to see my GP early in the new year so I'll try to post any results for any labs that are done.

[humanbean in reply to f1ying_swallow]

Before I was treated for anaemia I could barely make it upstairs. When I had no choice but to go upstairs, as I went up my heart hammered in my chest, my head felt like it was about to burst, I was extremely dizzy and my vision would fade out. Once I reached the top and stopped moving I would be panting for breath, it felt like my blood dropped out of my head and into my feet, I would feel sick and I thought there was a strong possibility I would collapse. I am assuming I had something like postural hypotension, but since I've been treated with iron pills it has gone away completely. I can't quite run upstairs yet and don't think I ever will be able to, but at least I don't feel dizzy, sick and faint when I reach the top now.

I take 630mg (3 x 210mg) of ferrous fumarate per day, spread throughout the day. I take each pill with 1000mg (1g) of Vitamin C which helps absorption. (Keep iron away from thyroid meds) After 5 months I am much better but I still have some way to go. I'm hoping to be off the iron in another couple of months, but I'm not stopping until I know my anaemia is completely cured.

With an improvement in my iron I found my thinking and concentration improved a lot. My memory and my losing of words (aphasia I think its called) haven't really improved yet, but I'm hoping they will come back with high doses of T3. I think the brain and the heart are the two most obvious things to suffer from low T3. I'm expecting improvement to take several months. But all I can do is keep my fingers crossed.

Another thing you should research is Co-Enzyme Q10 or ubiquinol. It is astonishingly expensive in the UK but is much cheaper if you buy it from the US even when you take into account the postage costs. Don't buy lots at a time because you will incur customs charges if you do. And you would benefit from taking 200mg per day.

[debjs]

I have found an improvement in my memory since taking B12 supplements and used to feel that life was happening around me but I couldn't quite catch it! I was told my B12 levels were fine but I discovered they were 155 (150-900) which is barely in range. The sadly missed Dr Skinner advised me to take B12 and said anyone who is hypothyroid should take 1000mcg a day.

Interestingly I commented to my mum's consultant that she had really perked up since starting B12 injections (she has just been diagnosed with Alzheimer's) and the consultant said B12 is good brain food.

I would advise you to find out your exact levels and never just accept they are normal.