I was diagonised with stage 4 Hodgkin's lymphoma in oct 2012, 7 different types of chemo and 2 stem cell transplants later I'm still here and hodgkins free for 11 months. Due to treatments I have a non functioning spleen so I was on 961mg septrin, 500mg of amoxicillin & Aciclovir every day. Many meds & biopsies mean I now have a thyroid issue. From janurary 2015-Over 3 months I lost 10kg, (was 81kg due of illness & meds but normally weigh about 67kg) so I just thought my weight loss was due to my continued recovery, doc said I was folate anaemic & suffering from malnutrition so was prescribed folic acid 5mg, my b12 was ok. In April I was hit by servere exhaustion, muscle aches & cramps & became very weepy on occasion. Doc diagnosed hypothyroidism in June & I've been on levo since, increasing to 75mg 10 days ago but my GP & oncologist reckon I will need around 125mg. Muscle cramps and aches caused disturbed sleep so GP & oncologist advised to stop taking Septrin, the cramps have disappeared but I still get the odd muscle ache but this may be due to an increase in my daily activity after years of treatment. I see my oncologist once a month at present, I've had bouts of weepiness & thought it was depression but docs disagree and will not prescribe antidepressant as it will mess up my bloods, they say the low mood and weepiness is due to the thyroid issue & will improve. is this normal with thyroid issues? I'm trying to be patient but it's hard going. I am a very strong person but understand 3 years of illness have taken there toll but docs seem adamant it's my thyroid issue.
Prior to my hodgkins diagnose I was a gym obsessed very fit 42 yr old working mum who loved gardening and DIY, I was constantly busy with some project, now I can bearly do normal household chores - will my energy levels go back to normal with levo?
I have my first endo appointment this week and need help, what do I ask? What can I expect to happen? My docs say to take levo as normal on the day of appointment as it won't impact anything, my appointment is at 5pm- will this effect blood results? Any advise welcome!
Welcome to our forum Babylola and first of all I want to give my sympathies that you have been diagnosed with Hodgkins Disease and I hope that the care of treatment you've been given can now put that on the back-burner for the present. One of my best friends was diagnosed unexpectedly when much younger but she had a long and fruitful life.
As for being diagnosed with hypothyroidism it is a case of reading and learning as much as possible. Many doctors only go by our TSH result and some adjust levothyroxine accordingly. They are told it is very easy to treat, i.e. give levothyroxine and get the TSH 'within range' and whatever else patient complains of must be due to some other cause. That's not the case.
When you are due for a blood test for your thyroid hormones, (GP is wrong) always make the earliest appointment for your blood test, fast and leave about 24 hours approx between your dose of levo and the blood test. Take levo afterwards.
Always get a print-out of your blood test results, with the ranges, for your own records and so that you can post if you have a query.
Many get back to good health when the levothyroxine is raised high enough for them to feel well. Some GPs halt the increase when the bloods are 'within range' but that's not always the best way. We have to feel well and have sufficient levo to raise our metabolism which will also help with your weight loss. Because our metabolism has been so slow due to hypothyroidism it can cause many clinical symptoms, one being weight gain.
If GP hasn't test your Vitamin B12, Vit D, iron, ferritin and folate ask for these as we are usually deficient if hypo and can cause symptoms too.
I hope you feel much better quite soon but it has to be gradual as with the increase in levo.
Hi shaw, thanks for getting back to me quickly. I've added a lot of questions to my list for the endo, I now realise it's probably going to take longer than I initially thought to manage the thyroid issue & my weight is going to go up even more until my levo levels are increased but it's a step in the right direction and I'm determined to get the right help and advise. thanks again.
Babylola, you have been having a rough time. Hopefully you'll turn the corner when your thyroid meds are optimal and energy should improve too. It's not going to be quick, symptoms can lag behind good blood results by a couple of months, but you should feel gradual improvement in symptoms and energy as thyroid levels improve. Improving fitness and stamina takes a long time when you've been inactive but it will get better.
Absorption of Levothyroxine is improved if you take it with water on an empty stomach, one hour before, or two hours after food and drink, 2 hours away from other medication and supplements, and 4 hours away from iron, calcium, vitamin D and oestrogen.
Ask your GP or endo to test ferritin and vitamin D. As you were malnourished it is likely they are also deficient. If B12 was <500 you will benefit from supplementing methylcobalamin sublingual lozenges, spray or patches. Being within normal range may be sufficient for people without health issues but the rest of us need levels to be optimal in order to feel well.
If the endo hasn't asked you to have bloods before the consultation s/he'll probably work off your GPs test results. It's better to take Levothyroxine after a blood test to avoid measuring the peak levels after ingestion, it's normal circulating levels which need to be measured. If you aren't sure whether endo will test bloods take your Levothyroxine after the consultation. Early morning blood draws are recommended as TSH is highest early. There's not much you can do if endo wants to test at 5pm but most phlebotomy depts will be closing then so it's unlikely.
It may be helpful to make a list of operations and chemo treatments with dates, and a list of current medication, doses and supplements and how long you've been taking them, to give to the endo to put on your file. It's handy to have a notebook with you to scribble questions you want to ask (when will I feel normal is probably frequently asked), particularly troubling symptoms and to make a note of answers.
At my endo clinic height and weight are measured by the nurse prior to consultation. Endo examines throat and neck as I had surgery for thyCa, checks pulse sometimes, checks hands for tremors and moistness which may indicate overmedication, discusses blood results, dose adjustments, and symptoms. A request order for bloods prior to next consultation and a request for a future appointment are given as I leave. Consultations used to take 40 minutes but I'm fairly well now and in and out in a few minutes.
Always ask for a printout of your thyroid results and any other tests ordered by your GP or endo with the lab ref ranges or ask the GP/endo to tell you what they are. It helps you track your progress and will eventually help you to determine at which dose and thyroid level you feel best and it helps members advise if you include them in your post when asking questions.
I hope the worst is behind you now and you'll be feeling much better in a while.
Hi Clutter, thanks for the quick response. Your endo clinic experience sounds the same as my haemo clinic so I should be comfortable with the processes which is a relief. I've been trying to educate myself re thyroid issue before I go but I feel like my heads about to explode! There is just so much info on the subject it's mind boggling, I've certainly had my eyes opened. I realise a more holistic approach is the best way forward so I've made changes to my diet & meds to aid my recovery but nothing that will significantly impact on my first endo appointment as I want to try and get an accurate reading on my bloods. I will change how I take my levo as currently i take it one hour before eating but I do take it with Aciclovir so I will stagger my meds as you suggest for optimal affect. I've now have a list of questions I feel confident asking thanks to you. I will ask for copies of my results so I can post them & keep track of my progress. Thanks again for your input.
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